Learn more about Dr. Burt’s journey with HSCT and his latest book, Everyday Miracles (Ep. 96)

Warrior: Dr. Richard K. Burt
AI: Halter
HSCT: Pioneer
Superpowers: tenacity, resilience, curiosity, compassion, holistic approach

With gratitude for time to connect with Dr. Richard K. Burt and celebrate the recent publication of his latest book, Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplant, we’re sharing the following verbatim transcript of this conversation, the first of two featuring Dr. Burt. 

Zen Jen: So, welcome Dr. Burt. It’s such a pleasure and a joy always to connect with you, but especially to now share you with our listeners and our audience of the HSCT Warriors Podcast. Welcome.

Dr. Richard Burt: Okay. Thank you so much for having me on.

Zen Jen: For sure. I’ve been devouring your latest book, Everyday Miracles: Curing multiple sclerosis, scleroderma and autoimmune diseases by hematopoietic stem cell transplant. Mostly just because it is such a page turner and engaging to read, and in my mind, it’s why we’re here today, to help others learn the importance of the text and knowing about HSCT for autoimmune diseases so that they can consider it as an option for treatment.

Zen Jen: I’m so eager to talk with you and hear your side of the story, and even what inspired you to go down the path of figuring out how to use HSCT for autoimmune diseases.

Dr. Richard Burt: Well, thank you. Kind of let me, predate that by saying why I wrote this book. And the reason I did is, I just felt there was so much misinformation out there.

In all fields, in the medical professional field, and by the lay public. And, um, I had been working in this area for, since I had the idea 35 years ago. I’ve been publishing medical papers and giving talks and doing medical textbooks and, uh, yet there[‘s] confusion and confusion in the media as well.

Zen Jen: Mm-hmm.

Dr. Richard Burt: That, you know, it was kind of like made the message of these, these advances to be, kind of drowned out. So, I thought it was very important to write an updated medical textbook, which came out in November of 2021. It’s 686 pages that can also be bought online by Amazon, but it’s a bit more expensive cuz it’s a medical textbook, and those things do tend to run a much higher price

Zen Jen: and a compilation of so many great authors in the field.

Dr. Richard Burt: Yeah. And so that included 140, professors, associate professors from around the world. So, it was an attempt to update the medical professional and research community on, why this is being done, on the different type of stem cells, the different regulations involved, and the results, and, and indications.

And that was an attempt to help people, professional people, to better understand it and to relieve some of the confusion that’s been sewn out there. But I also wanted to empower the patients and write a lay book that, a non-professional would understand and would enjoy reading… To help them clear up a lot of the misunderstanding that [00:03:00] exists.

And, you know, that arises, you know, for many reasons. But what I found in my career is, uh, of course, uh, information and knowledge is good. But limited information and limited knowledge is dangerous. And, uh, unfortunately in our media era of five second sound bites, that by definition, is limited information.

So that’s why I wanted to, do those, uh, two textbooks as well as, take the opportunity to get 12 new publications out now, in the medical literature. You know, the publications by themselves and medical literature just weren’t informing people or changing the field. So, the one, the medical textbook was for professionals in the field.

And the, lay book is for patients to know and to understand, for them to be aware and for them to be able to make a decision that they feel is best for them. I mean, the whole idea that I, and I bring this out in my book and behind the Western foundation of law and our legal system is consent.

And, to be properly consented, you need as much information as possible. So I wanted to try to get that out to the layperson, as to how this field was developed. And, the way I did it was kind of in profiles of courage of individual patients because, you know, my patients came from everywhere, all around the world, not just within America.

Actually, most of my patients did not come from the area around where I was doing transplants. And, you know, these are people who just weren’t accepting the status quo of continued drug modifying therapy that slowed their disease but did not really reverse it. You know, they weren’t accepting that answer.

And so there was a lot of courage on those patients and determination and the [00:05:00] kind of neat thing about transplant is you do spend the, you know, three weeks with a patient, in the hospital going through the procedure so you get to know them, as, as well as when they first come to you, and during follow up.

And each patient’s story is remarkable. The hardest part for me was, you know that there’s so many patients that could have been in the book and, you know, unfortunately you do have to have a limit to the book. The publishing house wanted only 50,000 words,

Zen Jen: (laughing) right?!?

Dr. Richard Burt: I was able to get it up to 70,300 words before they put the breaks on me because, as they said, you know, people won’t read books longer than that.

So, but it, it was able to include, you know, the stories of 54 patients, and, you know, interspersed within the development of the field for five different autoimmune diseases. The, you know, one that the biggest section has to do with multiple sclerosis and the second biggest section is systemic sclerosis.

Scleroderma, because [00:06:00] I had completed, the world’s first, randomized trials in those studies showing large superiority for transplant. But, also I wanted to explain to patients that, you know, there’s a big misunderstanding out there by everybody virtually, that it’s the stem cells and the stem cells are therapeutic, and they’re not. They do not regenerate neurons or oligodendrocytes or repair myelin.

They’re just a supportive blood product. That the efficacy, and the toxicity arises from the conditioning regimen. And, efficacy also rises from patients selection predominantly. Those are the, the main things that determine the outcome of this treatment. And once you perfect that, you can have these remarkable results.

And one of the things I found in, in writing this book is, you know, I just started randomly contacting patients, some of whom, you know, had the transplant 15, 20 years ago. And, just on randomly calling people, I [00:07:00] was amazed how everybody wanted to be included and, how the people I called, were still doing very well,

Zen Jen: mm-hmm.

Dr. Richard Burt: That far out from transplant, cuz obviously we weren’t seeing ’em anymore. You know, why should they pay the expense to fly to where I am, and then go through those procedures, you know, if they got better and stay better and, and didn’t need any medications. It’s good for them to finally be free of the ball and chains or tether of the medical system.

And so just talking with them, I realized, my gosh, this is really what I want to achieve when I first had this idea over 35 years ago. And so that was very rewarding. It also made me realize that somewhere, you know, I, I need to really find the time or set aside the time to write, long-term follow up on these patients.

Because when I first, you know, developed this or, approached people about doing this, you know, the, the medical community just thought it was [00:08:00] not a good idea. And, uh, now I think with the results that have been published, they’re somewhat gradually coming to realize the efficacy of this therapy and the advantage of it.

But there’s still, I think this resistance. Oh, well they’re all gonna relapse. Which is interesting, cuz when you do drug trials, they give one to two-year follow up and that’s kind of it

Zen Jen: and, that’s enough.

Dr. Richard Burt: and you’re kind of dependent on the drug and they’re not looking at reversing neurologic disability or getting you free of the medical system.

And so, you know, a, a publication showing those long-term outcomes would be, would be terrific. Now, I put the caveat out there that, you know, I was just randomly calling people. I didn’t do systematic

Zen Jen: sure.

Dr. Richard Burt: analysis to get the exact percentages, but generally if a patient relapses, they will recontact me, and after, you know, we find that relapses after five years is very unusual. Nobody tends to recontact, with the exception of one case I had a relapse at, 10 or 11 years. But, [00:09:00] mostly if you don’t relapse within the first, three years and occasionally out to five years, tend not to relapse. And with this particular regimen I use, you know, about 75% of people, don’t seem to relapse with the follow up we have on them and, return to, to a healthy, drug free, life without evidence of any new MS activity,

Zen Jen: which is why more people need to know about.

Dr. Richard Burt: Yes, it is, and um, so I, I explained in the book why I think it’s, it’s been …what’s retarded, this field, let’s kept it from going forward. And I mean, I mean obviously, it should move forward because there’s no license, there’s no money, there’s no patent for me for developing this. Other people can do it, but they’re not doing it.

And so I kind of discussed why I think that is in the last chapter, and it’s not any type of, you [00:10:00] know, malevolence by anyone or, or group of people that have, held the field back. It’s more kind of just, a mindset or misunderstanding in the way our medical system has been set up. And so, you know, I wanna, you know, at the end of the book you can read that, it should, you know, should find that interesting.

But I break it down into risk benefit, that is the concept of risk benefit. I don’t directly mention this in the book, but you know, there’s kind of this paternalistic, uh, attitude that, the doctor can assess your risk for you or somebody, like a, ethicist or your, insurance company or somebody sitting in their office can assess it for you.

And that’s absolutely not correct. They’re not in your shoes. They don’t know what you’re suffering. They don’t feel it, you know, it’s the patient, individual patient that should always have the right to determine the risk benefit of what they’re doing, [00:11:00] provided they’re properly informed of, of all the risks.

And, not the government, not some insurance company, not some bureaucrats sitting in their office. You know, that is the foundation of Western law. It’s consent, it’s your, that’s the difference, and I bring that out in the book. The difference between a gift and stealing, is only consent.

Zen Jen: Mmm.

Dr. Richard Burt: The difference between making love and rape is consent. And the difference between a physician or a surgeon when they give a medication or do an operation, uh, the difference between them assaulting the patient and treating them medically, is consent. Consent is the key, to what, to what, we do. And that consent needs to come from the patient who receives that treatment or interacts with that system, not from some independent body, that assumes this paternalistic or colonialistic [00:12:00] attitude towards the person.

And I, you know, even bring out a story in there at the Vatican where I give a talk and they had this ethicist from a prestigious American university talk, and he was very critical of this. Got in an argument with one of my patients there. And so the patient finally said, why don’t you believe me? Why don’t you believe these publications?

And he said, well, he just doesn’t agree with the risk benefit of it.

Zen Jen: right.

Dr. Richard Burt: and I thought to myself, what the ethicist, and this is a quote ethicist. What he’s missing is the concept of consent. That is the individual patient who is suffering this to make their own decision. Because once you’re in those shoes, things look very different than when you, your yourself, aren’t forced to walk that path and look at your life only further declining, despite all the suffering and expenses and treatment you’re getting.

So, I think you know, kind of from a societal perspective, we need to get back to this concept of [00:13:00] consent of the individual. And so that was number one, risk benefit. Number, two is kind of homelessness that, you know, I, I was not trained as a neurologist, nor a gastroenterologist or a rheumatologist, yet I developed this therapy for those diseases.

And in fact, there is, no National Institutes of Autoimmune Diseases. There are no centers around the world or around America that are, an institute of autoimmune disease that I’m aware of, and there’s certainly no federal funding for that. Unlike a National Cancer Institute or, at the NIH, or you know, cancer centers around the country funded by the NIH.

And so, autoimmune disease are orphaned off into all these different, divisions and departments and, you know, I think that’s kind of somewhat retarded the development of this field. If there were institutes autoimmune disease within which there are divisions of cellular therapy, hematopoietic stem cell transplant, as well as other cellular therapies that are being developed for [00:14:00] these diseases, I think would help, you know, accelerate, advances in the field.

Because as it would stand, you know, subspecialists that spent their career or life working in developing, thinking about a given autoimmune disease such as Scleroderma or MS, they, they don’t understand transplant, which came out of hematology and they view it as all one kind of treatment and they’re hesitant to refer their patients to it.

You know, they’re in a different fiefdom or a different silo. And, transplanters unfortunately are in, also in a different silo, which is transplanting leukemias. And so, they’re used to thinking these aggressive myeloablative of regimens. And, you know, if you make that transition like I did, where you’re in between those two silos, you can focus on safer non-myeloblative regimens and, and why that is the rationale for, for what we need to do for transplant.

So, a [00:15:00] myeloblative regimen is a cancer regimen that totally destroys the bone marrow, that makes all the cells in the blood, your immune cells, but also your red blood cells and platelets. And, of course if you can’t do that, you won’t live and you have to give those stem cells back that you collect from the patient or you’re not gonna recover.

Non- myeloablative means you target only the immune cells. You do end up suppressing the bone marrow, but it doesn’t kill it. It’ll recover on its own. You don’t have to give the stem cells. It’s just a supportive blood product that hastens your recovery. And so it’s a prudent thing to do, but it’s not necessary. And so, you can make your regimen safer, without mucositis that you get with cancer regimens, without injury, or minimal risk to other organ systems, and just focusing in on the immune compartment to knock it down then allow it to rapidly regenerate or reset with, what appears in a majority of patients, if you get the regimen right and patient selection right, can be very long-term, remissions that really change natural history of [00:16:00] these, this disease.

Now, in my medical publications and talks, I never use the word cure. Yet, in the lay book on the title, I put cure because I want to catch people’s eyes. But I put the caveat in the book that, you know, we have these very long-term remissions now, sometimes out to 20 years, 10, 15, 20 years. And the majority, with the right regimen, with the right selection of patients… that have, have gotten better, stayed better, and haven’t relapsed.

But, you know, but there is no definition for a cure for these diseases cuz nobody ever had that luxury to define it, so.

Zen Jen: Right.

Dr. Richard Burt: You know, we can’t say that. We can say it’s changed the natural history and once you’re thinking, 10, 15, 20 years with no evidence of recurrence and, and you got better and stayed better, you know, perhaps we have found the right door that, where you can start thinking in those terms, or at least apply this treatment for these diseases, that are having, you know, a, a more aggressive course. So, um,

Zen Jen: And so on that note, what do you think needs to change, in order for more physicians [00:17:00] to, as you say in your book, treat the patient from a more holistic perspective, or at least like even in medical schools, encourage the physicians to be working more transdisciplinarily, if that’s a word, to just connect outside of their subspecialties and begin understanding that these approaches to treatment have such potential.

Dr. Richard Burt: Yeah, well, you know, all physicians want the best for their patient, but they’re trained in certain ways and it’s kind of, you know, you get busy in your life, and you get down in one type of silo, and it’s, it’s hard to,

Zen Jen: It’s the way we’ve always done it.

Dr. Richard Burt: Yeah, it’s hard to see things outside of that. And so, it’s kind of a system itself. And so I bring that up in the other two things that I think are hindering this field, and, one of ’em I call eyes wide closed.

Zen Jen: Mm-hmm.

Dr. Richard Burt: And that’s where, you know, you’re trained a certain way, and I’m [00:18:00] all for education and information. I’ve spent my life involved in that, and also, constantly learning and, developing these new treatments and then learning from my patients how to perfect it and refine it from, you know, the results of how they’re doing.

But, what I was thinking I’d bring out there is like when I was in medical school and graduated from medical school and at the ceremony for the graduating class, the speaker congratulated us on our accomplishment. It was definitely a lot of hard work and, sacrifice. But, he said half of what we taught you is wrong. We just don’t know which half. And to me, that was like an eye-opener because in medical school there’s so much to learn. You just kind of force fed and you memorize, memorize, memorize. But a lot of these quote memorize facts actually, are wrong and misdirect you. And so, you know, you’re not necessarily taught to think independently.

And, [00:19:00] that’s something that you always have to kind of maintain in yourself to question and think, and that’s really what science is. Science should never be used to bully, or intimidate, or silence anyone. It should be used to question and rethink what you’re doing, and that’s where I bring out how I was taught at the NIH working in the lab, talking with the lab chief. That research is repeating the search. It’s re-searching.

Zen Jen: Mm-hmm. Right? Trying to prove that what you found is valid over, and over, and over.

Dr. Richard Burt: Right. And so part of this is, you know, minds kind of get locked in certain paths instead of rethinking. And then when you come from the outside of the field, uh, you’re then challenging the elites in that field and they’re gonna be naturally skeptical cuz you don’t have their pedigree.

So I think that’s, you know, kind of a resistance that, that you come up to. And, you know, as I said, [00:20:00] Virchow, a quote from Virchow, you know, the founder of, pathology, you know, he said a, A good doctor treats the disease, A great doctor treats the patient.

Zen Jen: Mm-hmm.

Dr. Richard Burt: and there’s a lot of truth to that. But, medicine has become so, subspecialized with so much knowledge given one area, you end up really focused in one area.

So, I think when you’re, jumping across those silos or areas, you’re given an extra high bar to, to leap over. And, and that’s kind of, I think probably one of the things that has held us back. And I think just education, is, is one of the ways to help come around that, and not just educating the medical community, but educating patients.

Zen Jen: Right. How to ask the questions.

Dr. Richard Burt: Yeah. It’s their life. It’s their disease. It’s, they are the ones suffering through this. They’re the ones asked to find the resources to deal with this. So, you know, they’re, [00:21:00] they’re the most important, who need to be informed, and that’s why I want to get this, lay book out there.

And then the final, of course, I call financial toxicity. And what that is, is that as physicians, we’re never taught the cost or price of something for the patient, whether they’re paying, or insurance is paying, or society is paying. And I think that has allowed just medical cost to far exceed inflation all the time.

And, you know, the danger with that, we should, you know, we should understand, the cost effectiveness of therapies, that is the cost of this therapy compared to another and the benefit for the patient, and make the patient you know, aware, but those publications we’re just not taught that and, unfortunately in this age, more and more physicians are just becoming employees of large institutions, hospitals, whatever.

And they’re pushed to generate, billing revenue, RVUs, and at the end of the year, they get a bonus for the more [00:22:00] they bill. Well, that’s not really what medicine should be. And, you know, if your patient doesn’t have financial security, they don’t have medical or psychological security either.

So, physicians need to be independent professionals who can protect and advise their patients through the healthcare field, because medicine is a profession, but healthcare is a business. And much like a lawyer, protects their client, and if a lawyer is an employee of the judge or the prosecuting district attorney, there’s no way, there’d be such a conflict of interest that he could protect his patient.

So, physicians need to be independent professionals, not employees, and then focus, not just, and be taught, not just the best, medical, care, but, also protecting the financial interest of their patients. Because I explained how transplant is so cost [00:23:00] effective compared to these drugs. And I actually show in the MS chapter how all these MS drugs are about a hundred thousand dollars a year and which is what a non-myeloablative transplant is, and then you become, the majority become free of drugs long-term. So, it’s a tremendous cost savings, for the patient, for society, yet it doesn’t take off. And I think one of the things that would be good is, you know, we know you need to do a phase one, phase two, phase three trial, phase three being randomized, but then it kind of stops there.

What we need to do after that is have publications and cost effectiveness comparing different, therapies that are effective for disease. Not, in any way to ever say you’d wanna give the cheapest to anyone. No, you don’t wanna do that. You want to give the best, cost- effective therapy to a patient. It’s like if you take your car into someone to fix it up, and it just needs a tune-up, and you come back and they put new tires on, they put new brakes on that you didn’t need, they put in a new hydraulic system, and in the tune-up they put in spark [00:24:00] plugs that were built in Italy for Lamborghini’s and cost an incredible amount of money, and they hand you the bill, you’re gonna say, no, I’m not paying for that.

And you know, that’s what’s going on in medicine. And in fact, you’re getting billed by physicians who have no idea what those bills are. And that is something that our system needs to tweak because as I bring out in the end, you know, how to… medicine has become so complex and so invested in itself, it’s hard to change it or hard to think about a constructive way to bring about change. In fact, you know, I bring out maybe as a society we could focus on four things that it should be, you know, advanced, affordable, accountable, and all- inclusive. I call that the four A’s. Those goals however can compete against each other.

Zen Jen: Mm-hmm.

Dr. Richard Burt: Such that if it’s all inclusive, you may not get the most advanced and best care, because no matter whether you’re dealing with the government or insurance company, there’s [00:25:00] not unlimited resources. But if we start there and then we figure out how, to achieve that. The way to achieve that is put checks and balances on each of those, and one of the checks and balances that is missing is on cost effectiveness. That is the benefit versus cost of the treatment. And if those were required to be published out there and made available to patients and physicians, and the physician was an independent entity, not pushed to bill for some big institution getting a bonus as they achieve it, or being penalized if they don’t, but focused on their patients.

And the reward is, you know, patients will spread by word of mouth if you’re doing the right thing for ’em, and then you’ll, you know, get more patients and be more successful. But if, if we incorporated that in the training, and in the publication process, if large journals like New England Journal, and JAMA, and Lancet in the medical field were forced to publish cost-effective analysis, it would, you know, I think help put a [00:26:00] check and balance on these runaway medical expenses, that are going on in the medical system.

So those are kind of the, the four things that I’ve brought out at the end of the book that I think could help change, what is holding this, this field back and you know, because, a lot of people say, well, it’s the FDA or it’s a pharmaceutical or a company or whatever. And no, it’s not really that.

It’s the structure of medicine itself that needs to be tweaked and improved, and a lot of that is, obviously beyond my ability or authority to do that. But I could bring that in the book so that other people can start thinking about it as well as, you know, one of the reasons I had to bring that out is at the end of talking about the results of these five diseases and how patients are doing, you know, one of the big questions that come to be, well, if this is true , why isn’t everybody doing this? What’s going on? So of course, you know… they could say, well, this is just science fiction. You wrote a good science fiction book. And, but that’s, [00:27:00] these are the real results. And so that’s why I had to explain that last chapter, why I think this is being held back.

And it’s certainly not anything intentional by any one group, but it’s the way our system has ended up being structured and,

Zen Jen: now broken

Dr. Richard Burt: is, is marching forward, kind of trampling over the individual patient themselves. And that needs to be tweaked, and I hope it is. My role in all of this is just to get the information out there after showing how successful this can be.

There are risks with it. Definitely are. Patients have died and I bring that out in the book. And that’s also why I argue for these non-myeloblative regimens, they’re less risky, they’re safer. And so, I’m kind of looking back at the field and where it’s going, and it’s never where… I started it, but it’s never where I wanted it to go, where NIAID’s pushing these myeloblative regimens, which are more dangerous,

Zen Jen: right.

Dr. Richard Burt: More risky, more toxic. And they’re not shown to be any better than a [00:28:00] non-myeloablative, and they don’t, the rationale, you can make a non-myeloablative even more immune suppressive than a myeloblative, so that there’s no rationale to do it.

But it’s, it’s moving forward doing that. And they’re twice as expensive as non-myeloablative transplants, and,

Zen Jen: twice as toxic it seems,

Dr. Richard Burt: and, and they’re just more potentially dangerous. So, it’s like this, this field, I’m the one arguing, you know, when I first started, people thought it was too dangerous.

Now I’m the one here saying, no. The way it’s going forward is too dangerous. This is how it should be done yet, you know, people don’t seem to listen, so I thought the best way is to inform the patients, and that was the goal of this book. So, the patients have knowledge and can help to change, what is going on in the field of medicine.

Zen Jen: Education is key.

Dr. Richard Burt: Yeah. So, and I’ve kind of come to the point, you know, I’ve done all I can do. If this doesn’t succeed in, opening eyes and changing things, I don’t know what will anymore. [00:29:00] So, but you know, that was my goal, to get a major medical textbook out and get the lay book out because doing these medical publications, giving talks to medical societies wasn’t doing it.

And there was tremendous misinformation just generated out there. Which, you know, when you actually do it and you know what’s going on, it just causes you to step back and raise your eyebrow. And that information came from every direction, misinformation, including media and, you know, physicians and, you know, sometimes, patients themselves.

So, I thought it was best to, to get this out there so people understand it and help clear up, misdirection that’s just been put out there with people who, I don’t think they mean bad, but again, limited information is dangerous because

Zen Jen: absolutely

Dr. Richard Burt: you, you come to conclusions and directions that are not correct and

Zen Jen: and that’s part of the reason I started this podcast, so that

Dr. Richard Burt: yeah,

Zen Jen: people could begin to better trust the [00:30:00] information they were finding in those Facebook groups or online, right?

It’s tough to know who’s behind that comment. And the comment is one sentence long and, and, I need to know more. And so maybe hearing people’s stories, maybe hearing people’s journeys, spoken from their own voice. Right?

Dr. Richard Burt: Right.

Zen Jen: Might help people find some sense of trust in what they’re hearing and learning and that maybe in hearing from 90 plus individuals that I’ve interviewed, and that every story is indeed unique, as you mentioned, right? That maybe we find some commonality, and maybe we find strategies to help with that self-advocacy, which is so difficult for so many people, especially when they’re stressed because they’re facing an insurance appeal, or stressed because they’re changing medicine and it doesn’t seem to be working, and stressed because they just don’t know what to do next.

So, I think your book is really going to help. [00:31:00] With all of those things, spoken from the professional standpoint that hopefully people can trust your voice.

Dr. Richard Burt: I hope it does help and, that it, you know, not just help individual patients, but helps in some way to modify this bureaucracy of medicine, to refocus it back to the patient in front of you.

Because ultimately, if you’re not helping that patient in front of you, you’re failing. And, that needs to be, to be what everything comes back to.

Zen Jen: You’re just the best doctor I know, and I appreciate you stating that so articulately and sharing so much with us, in this brief time we have together. I do want to acknowledge that we were scheduled for just a half an hour and we’re past that now.

We also have time set aside Friday that we can either [00:32:00] continue through this conversation, if you have the time now, or reconnect again Friday to tackle some of the other questions I have for you.

Dr. Richard Burt: Let’s, let’s go on Friday. So, um, people have a little, uh, time to digest what was said here,

Zen Jen: right? No, this is, this is great. I think it’s a great intro to why they need to read the book. And then I’m curious about your next steps in research and, all of that, so,

Dr. Richard Burt: Good. Well let’s take that up on Friday then. But I really, you know, everybody that’s read the book that has talked to me, has really enjoyed it and I think what makes it are the journeys of each patient.

And I wanna reemphasize, cuz I’m trained as a physician, in confidentiality never to release medical information on anybody. And you shouldn’t, if your patient’s gonna trust you, I

Zen Jen: Right.

Dr. Richard Burt: Each patient I contacted, I emphasize it’s their choice. They don’t need to do this, no obligation to me. And that I co-developed it with [00:33:00] each patient who then, had an opportunity to read what was written to make sure they’re comfortable and okay with it. And I gave, I removed all last names and gave every patient the option of a pseudo first name, or they could, if they wanted, use their real first name. And then I say at the beginning of the book that I will, you know, never confirm, deny, or add anything more to what’s in each patient’s story.

That, that is a patient story, and that is, their right to elaborate on more or to come forward, or not as however they choose. But each patient signed, written, consent and was aware of what was written and, okayed it and helped in the development of the story. So, um, I think that’s very, you know, important, to always, maintain that confidence, and trust in privacy with your patients. But that’s how I was able to do it, to get those stories out there in what’s really a profiles of courage, and that, as a matter of fact, I almost called this, [00:34:00] profiles in courage, but you know, John Kennedy wrote a book called Profiles in Courage that I had read at a young age, and so I didn’t wanna copy that title. And the title I chose, it was actually Kate, my nurse, who suggested this title cuz Everyday Miracles cuz she said a patient called her one time and she was talking to the patient and the patient said to Kate, what is, what is it like working with Dr. Burt, and before she answered the patient said, I bet it’s like watching Everyday Miracles.

Zen Jen: Mm.

Dr. Richard Burt: And so, you know, Kate told me use that as the title, and, uh, that’s what I, uh, that’s how it ended up being titled Everyday Miracles.

Zen Jen: I’m so grateful for Kate and her support of you and your work over the years and

Dr. Richard Burt: Oh, me too.

Zen Jen: Oh, she’s just been a phenomenal support.

Dr. Richard Burt: Yeah. Too many times you feel like you’re in the, uh, UFC octagon and, uh, you know, just to have some support in your corner is a, is uh, such a godsend.

Zen Jen: Well, especially for you to be so [00:35:00] isolated in everything you were doing, and to work for a decade and be submitting publications and keep getting turned down. I don’t know how you kept up and I’m so glad you did, so I appreciate

Dr. Richard Burt: Three decades.

Zen Jen: Yeah, I appreciate your persistence.

Dr. Richard Burt: All right, well thank you so much and we’ll chat again.

Zen Jen: We’ll connect again soon. Thank you so much Dr. Burt.

Dr. Richard Burt: Thank you for getting this information out.

Zen Jen: You know, HSCT Warriors, we are an education based nonprofit and the whole point is to help promote awareness that this can be considered as a treatment for autoimmune diseases. More people just need to know the facts so that they can make the best-informed decision for their care.

Dr. Richard Burt: Alright. Thank you.

Zen Jen: Take care, Dr. Burt, we’ll talk soon. Okay.

Dr. Richard Burt: Bye-Bye.

Tune in next Wednesday to hear more in a second conversation with Dr. Burt. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplant (2023)
Astemcelljourney.com

Reconnect with Heidi to learn how she took back control to pursue HSCT Warriors (S7 replay)

Warrior: Heidi Peterson
AI: Relapsing Remitting MS
HSCT: July, 2019
Superpower: strength

Do you take the time to celebrate in life? How often do you recognize the little victories?

Although Heidi was diagnosed relatively soon after her first experiences with early symptoms of multiple sclerosis, the doctor she saw focused more on prescribing medications to treat symptoms she was experiencing and it seemed her MS diagnosis was set aside. After seeking other care that led to identifying additional health issues, she soon realized the tally of prescriptions totaled thirty different medications, including some that should not be taken together.

Tune in to learn more about how Heidi regained control of her health care and pursued HSCT in Monterrey, spent six months taking cautions to work through neutropenia, only to return to quarantine due to covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Continue learning the power of mindset along Zarko’s journey with HSCT in Moscow (S7 replay, part 2)

Warrior: Zarko Bilal
AI: Relapsing Remitting MS
HSCT: April, 2021
Superpower: positive thinking

When did you start to figure out the important things in life? How do you overcome fear of the unknown? How do you keep your mentality in tact?

The continuation of this two-part episode reveals even more detail about Zarko’s experience with HSCT at the AA Maximov Hospital in Moscow, including how he managed the stress of delays due to covid, how he kept himself busy during isolation, the mindset he embraced, and insights gained during his journey. We are grateful to spend two episodes with Zarko learning about how he trained his mindset in preparation for HSCT and gained new perspectives to carry forward in life post-transplant.  

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit Zarko’s journey to HSCT and find joy with what is (S7 replay, part 1)

Warrior: Zarko Bilal
AI: Relapsing Remitting MS
HSCT: April, 2021
Superpower: positive thinking

When did you start to figure out the important things in life? How do you overcome fear of the unknown? How do you keep your mentality in tact?

A black and white photo portrays a man sitting at the edge of a pointed ledge as though he is thinking. The HSCT Warriors Podcast logo at the top of the page frames the question, How do you overcome fear of the unknown? Details about the interviewee, Zarko Bilal are offered in the bottom right corner, include his autoimmune diagnosis of multiple sclerosis, when he had HSCT Warriors in April, 2021, and his superpower of positive thinking.

After a happenstance diagnosis of MS, Zarko initially held on to the hope that his symptoms would be a one-time hit of CIS. Easy to rationalize because of all the stress he experienced, he recovered fairly quickly and set out on his career path as a new attorney. After a year, the disease caught up with him, and unfortunately he noticed new symptoms that helped confirm his diagnosis. As he consulted with research about the disease and various treatment options, he found HSCT and asked two different neurologists for their opinions.

Tune in to the first of this two-part episode to learn more about Zarko’s plans to pursue HSCT and how they were delayed by covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Reconnect with HSCT hopeful Yavor to learn from his consistency and positive mindset (S7 replay)

Warrior: Yavor Milanov
AI: Relapsing Remitting MS
HSCT: Scheduled in March 2022
Superpowers: Consistency

How well do you attune with culture? Is your mindset one of growth, or is it fixed? How do you navigate your internal compass?

After his diagnosis, Yavor felt tired and run-down facing his experience as a new immigrant working three or four jobs at a time. He experienced terrible side effects after steroids and trying an initial disease modifying therapy, so returned home to Bulgaria for a long respite. Rest, reduced stress, and time with family and friends  helped reduce his symptoms and after six months, he returned to Canada and began noticing his disease becoming more active. 

Refusing to accept an incurable disease as his destiny, Yavor made radical changes to his diet and lifestyle to become as healthy as possible. Tune in to learn more about Yavor’s experience with the Wahl diet, mesenchymal stem cells in Panama, how he leaned on the discipline of swimming to keep his motivation and disposition positive, and his ability to anticipate (rather than react) to what is on the horizon, including his plans to pursue HSCT in Russia.  

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Reconnect with Samantha along her journey from Melbourne to Moscow for HSCT(S7 replay)

Warrior: Samantha Lakey
AI: Primary Progressive Multiple Sclerosis
HSCT: July 5, 2021
Superpower: eating

Are you someone who believes in fate? How do you recognize joy in yourself?

Only after Samantha endured a full-body seizure and spent weeks in the hospital did she finally receive a diagnosis for symptoms that doctors continued to brush aside, even though she had been struggling with fatigue, insomnia, numbness, nerve pain, and loss of balance, loss of vision and taste, tremors, and more for nearly two years. With the proper diagnosis, Samantha and her family were soon connected with individuals and resources that pointed her in the direction of HSCT, including a personal connection with someone who had been through HSCT seven years prior. 

Tune in to learn more about navigating the possibilities of HSCT from Australia, Samantha’s experience with traveling to Russia for HSCT, and how she is faring just three months post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit Mike’s journey to HSCT and be inspired by his humble fortitude (S7 replay)

Warrior: Mike 
AI: Multiple Sclerosis
HSCT scheduled for January 2022
Superpower: fortitude

How do you share your diagnosis with others? How familiar are your loved ones with the demons you battle? How do you reconcile your experience with disease?

Having received a diagnosis at the young age of 22 after a bout of optic neuritis, Mike experienced reversal of his symptoms after a round of steroids and figured the disease would be manageable. Fast forward ten years and suddenly Mike realized the disease had actually been simmering just beneath the surface and after a severe hurricane, began more noticeably interrupting his daily functioning. 

After trying a couple of different disease modifying therapies, Mike was introduced to the idea of HSCT in social media advertisements for the Selma Blair documentary, and began exploring it as an option just two months ago. Tune in to learn more about the various ways that Mike has felt supported along his journey despite the questions and concerns that any HSCT Hopeful has also considered. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit insights from Jacob’s strategies to navigate the journey to HSCT (S7 replay)

Warrior: Jacob Kinch
AI Multiple Sclerosis
HSCT: October, 2020
Superpower: new perspective

Where do you find glimmers of hope? Do you recognize the double-edged sword of multiple sclerosis? 

Jacob shares so many relatable aspects of his experience with multiple sclerosis, including frustration with doctors, questionable approaches and decisions around treatment, and challenges with paying for expensive medications. Despite his best efforts with disease modifying therapies, the side effects that Jacob experienced made it dark and difficult to live with MS. Once he found HSCT and began researching, he found a glimmer of hope that was strengthened after he connected with someone at Clinica Ruiz to address his pages of questions. 

Tune in and learn more about Jacob’s experience at Clinica Ruiz, navigating travel and processing other peoples’ judgments and skepticism, including doctors’ and neurologists’ opinions. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Reconnect with Cassidy along her journey of over-achieving before and after HSCT* (S6 replay)

*This episode contains content that may be alarming to some listeners, including mentions of suicidal ideation. Please check the show notes for more detailed descriptions and take care of yourself*

Warrior: Cassidy V. Chapman
AI: Multiple Sclerosis
HSCT: July15, 2019
Superpower: Passion for bringing awareness to HSCT

To what extent are you an over-achiever? How open are you to receiving support from others? Where do you find family?

The HSCT Warriors podcast logo with the tagline: Illuminating Invisibilities of Autoimmune Disease is set in the upper left corner above the image of a person with long hair lying on a soft surface with their hands balled in fists, covering their eyes as though they are crying or frustrated. A question from the podcast of "How open are you to receiving support from others" is posted to the left of the person's face, followed by details about the interviewee. Warrior: Cassidy Chapman, AI or Autoimmune Disease: multiple sclerosis, HSCT Warriors: July 15, 2019, Superpower: passion for bringing awareness to HSCT

After being diagnosed with MS her first year of law school, Cassidy was initially able to manage her disease with a variety of disease-modifying therapies. Though building a successful career as an attorney came with compounding stress that caused significant relapses which left Cassidy fighting optic neuritis and blindness, it was the fatigue and cognitive impairments that ultimately led her doctor to recommend she stop working. After waiting 33 months to be approved for social security disability, Cassidy found creative ways to stay afloat while managing her relapses and steroid psychosis. Thanks to the guidance of an eleven-year HSCT veteran, once Cassidy decided it was time to pursue HSCT, she surrounded herself with caregivers.

With frank conversation about Cassidy’s experience seeking disability about the side effects of multiple sclerosis and its’ medical treatments, including steroid psychosis that led to homicidal and suicidal ideation (skip 40:00-42:30 and 1:02:00-1:05:05 if you want to avoid these parts of the conversation), this episode offers helpful insights about MS symptoms to look out for both pre- and post-HSCT. Tune in to learn more about Cassidy’s scare at 14 months post-HSCT and how her experience with HSCT has shifted her perspective and her priorities.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit Rachel’s journey with CIDP before myeloablative HSCT at the CBCI in Denver (S6 replay)

Warrior: Rachel Gallery
AI: Chronic Demyelinating Polyneuropathy Disease
HSCT: Oct 19, 2020
Superpower: Empathy

Do you consider yourself a lucky person? How often do you receive treatment for autoimmune disease? How layered is your circle of support?

The HSCT Warriors podcast logo with the tagline "Illuminating Invisibilities of Autoimmune Disease" frames a black and white image of a female nurse caring for a female patient's arm to prepare it for an IV. The question, "How layered is your circle of support" from the podcast episode is posed to the left of the patient and details about the warrior who was interviewed are posted below the question. Warrior: Rachel Gallery, AI or Autoimmune Disease: CIDP, HSCT: October 19, 2020, Superpower: Empathy

After spending nearly a year with strange symptom progression, a neurologist was finally able to diagnose Rachel when IVIG helped to offset some of her most problematic symptoms. After five years of managing her disease with IVIG infusions every two weeks, she found herself facing rapid decline, trying a variety of aggressive treatments including cytoxan and rituxan that failed to help. 

Tune in to learn more about the clinical trial at the Colorado Blood Cancer Institute (CBCI) in Denver, and the confidence to get through the myeloablative protocol and significant complications (namely graft v. host disease) amid the COVID pandemic. With so many helpful tips for mindset to accept support, illuminate invisibilities, and adjust to life with chronic illness, this conversation with Rachel offers practical strategies to make it through some really tough moments along the HSCT path.

 Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Colorado Blood Cancer Institute 
HSCT Warriors Podcast

Reconnect with Erin to find empathy and connection despite feelings of isolation (S6 replay)

Warrior: Erin Schoenlein
AI: Multiple Sclerosis
HSCT: March 15, 2020
Superpower: energy to help other people

How wide is your view? Do you know what it feels like to be well? For how long have you been distanced? 

Having been diagnosed with an autoimmune disease in high school, Erin is no stranger to advocacy for well-being and the importance of spinning challenges into positive opportunities. Although she did not qualify for the clinical trials in the United States, Erin researched her options and found herself at Clinica Ruiz just prior to the start of the global pandemic. Erin distracted herself from the chaotic stress of COVID by surrounding herself in a bubble of staying focused on positivity and gratitude expressed by others around her. During this conversation with Erin, hear more about how her experiences in Mexico and her quarantine upon returning home helped motivate her to find inclusive ways to empower others.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Sail MS
Paavitforward.org
HSCTWarriors.org

Continue learning from DeWayne’s experience with myeloablative HSCT (S6 replay part 2)

Warrior: DeWayne Durr
AI: Multiple Sclerosis
HSCT: Oct 29, 2020
Superpower: Confidence

How supported do you feel? To what extent do you think about each step that lies ahead? 

Continuing from where we left off in this two part episode, tune in to learn from DeWayne as he shares more about his experience navigating his return to work, changes with his diet, and considerations for health and wellness while in the early stages of recovery from the myeloablative protocol at Cleveland Clinic.  

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
www.rooftopprayerwarrior.com
www.hsctwarriors.org

Revisit DeWayne’s experience as the first patient for MS at the Cleveland Clinic (S6 replay part 1)

Warrior: DeWayne Durr
AI: Multiple Sclerosis
HSCT: Oct 29, 2020
Superpower: Confidence

How supported do you feel? To what extent do you think about each step that lies ahead?

Check-in with DeWayne to hear more about his experience as the first patient to receive HSCT for Multiple Sclerosis at the Cleveland Clinic. With so many details about his experiences with the myeloablative protocol of the BEAT-MS study, including securing insurance coverage, the staff and his in-patient experiences, as well as logistics and details about the time spent after discharge in a nearby hotel, DeWayne shares so many valuable insights, this interview airs as a two-part episode.

Tune in this week to hear the details about being in-patient at Cleveland Clinic and logistics for after-care in Cleveland, and next week, join us to hear more about DeWayne’s experience with recovery so far.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
www.rooftopprayerwarrior.com
www.beat-ms.org

Revisit the continuation of Joceline’s journey and a COVID work-around (S6 replay part 2)

Warrior: Joceline
AI: Multiple Sclerosis
HSCT: soon in 2021?
Superpowers: doing nothing

How comfortable are you with uncertainty? Are you able to leave the unknown alone? How do you find patience when you find yourself on the brink?

Picking up where we left off in this two part episode, tune in to learn more about how Joceline reacted to the idea of incorporating a wheelchair as an assistive device, how she continues to manage her multiple sclerosis as she awaits HSCT, and the practices she has learned through various resources and connections. As a nurse’s assistant by training, Joceline continues detailing her journey beyond diagnosis, attempts at treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience with lockdown in the UK while awaiting the Russian border to open.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
HSCT Moscow
MS Tripping on Air Instagram
HSCT Warriors Podcast
HSCT Warriors, Inc.

Revisit Joceline’s honest reflections and find compassion for others (S6 replay part 1)

Warrior: Joceline
AI: Multiple Sclerosis
HSCT: soon in 2021?
Superpowers: doing nothing

How do you establish trust in the systems? How many doctors have you fired? How do you find patience when you find yourself on the brink?

After initially being brushed off by doctors, once diagnosed with multiple sclerosis, Joceline found she wasn’t interested in pursuing medication for what she felt doctors knew very little about at the time. As she chose to pursue a natural course of treatment with Qi Gong, diet, and acupuncture, Joceline offers powerful reflections with the wisdom of hindsight in finding compassion for her younger self, who just wanted to feel ‘normal’ despite her diagnosis. 

Tune in this week to learn how after eight years of managing the diagnosis with alternative narratives and symptom etiologies, Joceline finally experienced her diagnosis-moment after finding a neurologist who appeared genuinely concerned for her well-being. Sharing details about the ups and downs of relapses, rejecting medications, and navigating modifications to walking, working, and support by the NHS medical professionals, this two-part episode offers a wealth of information and insights along the road to HSCT. As a nurse’s assistant by training, Joceline shares one of the most detailed interviews about her journey through diagnosis, treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience as she awaits the border to reopen.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Bates Natural Vision Improvement Exercises
Radical Acceptance by Tara Brach
Ahna Crum

Catch-up with Amy and celebrate her learning journey at nearly one-year post HSCT (Ep. 94)

Warrior: Amy Capel
AI: Multiple Sclerosis
HSCT: October 2021
Superpower: mentality

To what extent are you distracted? Have you ever been on the outside looking in?

We first met Amy in Season 7 when she described her struggle to understand the disease and the storm of negative side effects from the first medication she tried. Thanks to a friend who had success with HSCT, Amy was convinced and committed to making the best decisions for herself and her family which meant advocating for herself to pursue HSCT. We last spoke with Amy the day before she met with a new neurologist at Duke University, just days before she was scheduled to travel to Clinica Ruiz in Puebla.

Tune in to hear more details about Amy’s experience with the clinic, the culture, the physical and the mental components of her journey to HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Check-in with DeWayne after two-years from being the first patient on the BEAT-MS trial (Ep. 93)

Warrior: DeWayne Durr
AI: Multiple Sclerosis
HSCT: October 20, 2020
Superpowers: gratitude

Do you enjoy finding the why? How often do you extend gratitude?

As the first person to receive HSCT as a part of the BEAT-MS trial at the Cleveland Clinic, DeWayne has graciously offered great insights throughout his journey, including this update at nearly two-years post-transplant. From the strategies he has pursued to promote healing, to observations about interactions with others, this episode offers an abundance of resources that have helped along DeWayne’s journey.

Tune in and be inspired by DeWayne’s superpower of gratitude and his openness in sharing his story as the first person treated at the Cleveland Clinic on the BEAT-MS trial at the Cleveland Clinic. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
www.rooftopprayerwarrior.com
LED light therapy and Cryotherapy at the Chill Zone
www.hsctwarriors.org

Reconnect with Allison to celebrate superpowers at eight-years post-HSCT (Ep. 92)

Warrior: Allison Carr

AI: Multiple Sclerosis
HSCT: December, 2014
Superpowers: hope and grit 

Are you motivated to give back to others? To what extent do you recognize superpowers in others? How challenging is it for you to be optimistic?

As someone who spent nearly twenty years battling the unknown, Allison was surprised to be approached by a stranger curious about her drop foot, and even more surprised when she was finally diagnosed with multiple sclerosis. After battling with insurance to pursue HSCT outside a clinical trial in hopes to avoid the transition to secondary-progressive, and dedicating time to healing her physical body post-transplant, Allison continues to find gratitude and spread hope to others along her journey. 

Reconnect with Allison (who we first met in Season 3) to learn from her personal, physical and spiritual reflections, and how she is faring at nearly eight-years post-transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Medical Medium: Cleanse to Heal by Anthony William

Meet Alisha, hopeful for HSCT someday, even if it isn’t an option where she lives (Ep. 91)

Warrior: Alisha Daly
AI: Multiple Sclerosis
HSCT: hopeful
Superpower: Resilience and compassion

How fair is the playing field in your experience with autoimmune disease? How far have you been strung along before receiving a diagnosis? 

Despite a severe bout of optic neuritis, it took more than four visits to the emergency room and multiple specialists weighing in before an MRI was ordered to help assess why Alisha was experiencing severe headaches and loss of vision. Although the first interpretation of the MRI was deemed to be a clinically isolated incident and she received steroids which helped alleviate the optic neuritis, within just a few days, Alisha was hit with another attack of pain, floating spots and loss of vision. Tune in and be inspired by Alisha’s story of tenacity as she navigates her diagnosis and finding her way to HSCT… someday. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Fundraiser: https://gofund.me/2f1385d6
Instagram: Dirtygyul_

Meet Rebecca at four years post-transplant and learn from her gracious outlook (Ep. 90)

Warrior: Rebecca Katonica
AI: Multiple Sclerosis
HSCT: November 2018
Superpower: Grace

Do you try to explain away that which might be serious? When was the last time you took a leap of faith?

After an explosive headache behind her eyes, Rebecca found herself at the eye doctor who ordered an MRI that evidenced lesions and diagnosed her with multiple sclerosis. Insistent that she could still participate in a social event while wearing an eye patch, she began steroids that helped reset her double vision and vertigo. At this time, there was only one disease-modifying therapy to try, which gave her flu-like symptoms. Over her twenty-year experience with MS before HSCT, Rebecca tried all but one medication and ended up losing countless bodily functions until the point she was basically bedridden. 

Tune in to learn more about how Rebecca, despite having trouble sitting up in the car, successfully navigated the journey to Clinica Ruiz to undergo HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Be inspired by Cecilia’s resilience at four years post-transplant (Ep. 89)

Warrior: Cecilia Reyes
AI: Multiple Sclerosis
HSCT: July, 2018
Superpower: Resilience

To what extent has your view softened? To what extent are you learning as you move through life? Do you find blessings and opportunities in the challenges you face?

Check-in with Cecilia at four years post-transplant and learn from the many insights shared and be inspired to find a compassionate journey with yourself. From mindset and positive self-talk to diet and exercise, this conversation shines a light on the importance of patience, trusting the process, finding connection with yourself and community, and practicing resilience. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Find motivation from the success of Steve’s journey to HSCT in Russia (Ep. 88)

Warrior: Steve Apperson
AI: Multiple Sclerosis
HSCT: April 9, 2015
Superpower: compassion 

Is there anything you can’t do? How often do you find time for reflection? How often do you have space to go within?

After initial symptoms that occurred years apart, when Steve found himself unable to run without foot drop after the same three miles, he consulted with his doctor and after a week, received the diagnosis of multiple sclerosis over the phone. He moved to action raising money and became a top fundraiser for the National MS Society as he found himself researching the possibility of HSCT because he felt worse taking the disease modifying therapies. Eventually deciding to pursue transplant in Moscow, Steve found a majority of his symptoms resolved post-transplant and shifted his focus of advocacy to supporting others and helping more people understand the possibility of HSCT.

Tune in to hear how Steve is doing now, seven years-post transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Steve Apperson on youtube

Learn from Elyse about the possibilities of HSCT to halt both Lupus and Sjogren’s (Ep. 87)

Warrior: Elyse Meyer
AI: Lupus and Sjogren’s
HSCT: July 2020
Superpower: not afraid to try new things

Are you aware of being comfortable? How do you define success? How do you define quality of life?

Despite maxing out every possible treatment option, including biologics and steroids, Elyse’s immune system was attacked by two different autoimmune conditions. Diagnosed when bloodwork before a medical procedure indicated that her white blood cell count was low, Elyse was stressed throughout testing to rule out other conditions including cancer and HIV. Once the doctors diagnosed both Lupus and Sjogren’s, she began a rigorous regimen of medications in an attempt to interrupt the sometimes two-year long flares of rashes, eye and mouth dryness, salivary gland pain, and more.

Tune in to hear how HSCT has helped the multiple symptoms that Elyse experienced while battling two autoimmune diseases, whether she faces any side effects from HSCT, and how she is faring now at two years-post transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Celebrate life in 3D with Kristen, nearly eight years post-transplant (Ep. 86)

Warrior: Kristen Kroen
AI: Multiple Sclerosis
HSCT: January 2015
Superpower: confidence

To what extent does stress impact you? How full do you feel life is? How well are you able to put fear aside?

As an avid runner, Kristen managed several years of mystery symptoms before receiving the diagnosis of multiple sclerosis in 2009. Despite her aggressive approach with attempting to slow the progression, including solumedrol, rituximab, copaxone, and several other disease modifying therapies, it seemed the drugs had no effect. Kristen found herself slowing each year from running marathons to speed-walking to limping with a cane to a scooter and eventually a wheelchair, unable to hold a fork by 2013. Once she was connected with someone who had received HSCT in Germany, she was convinced. She applied in Italy and Russia and was accepted while she pursued the clinical trial at Northwestern, yet was rejected. 

Tune in to hear more about how a gracious pilot on a canceled flight helped her arrive at a second appointment with Dr. Burt to be treated on a compassionate care basis, her experience with divine interventions, trust in Dr. Burt through transplant, and how she is faring seven-and-a-half years later with her new lease on life.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources: 
Glen Howard meditation and prayer books

Check-in with Ali at nearly five years post-HSCT as we launch our ninth season (Ep. 85)

Warrior: Ali Roberts
AI: Multiple Sclerosis
HSCT: November 6, 2017
Superpower: Motivation

Are you someone who feels your emotions? Do you focus on what can (v. can’t) be done? Can you find the present in each moment?

The beginning of a new season offers the opportunity to check in with Ali and how she is faring, nearly five post-HSCT. Tune in to learn how Ali is managing menopause, strategies for wellness, navigating shifts in diet, exercise, hormones, emotions, and anxiety. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Dr. Burt’s non-myeloablative HSCT protocol (not yet recruiting) will be posted at clinicaltrials.gov – contact him in the meantime by emailing burtrrmstrial@scrippshealth.org

Embodiment, fascial awakening, and emotional regulation support offered by Jess Rachel – contact her to learn more by emailing jess4embodiment@gmail.com

Revisit Vic’s inspiring resolve and determination despite the naysayers and COVID (S6 replay)

Warrior: Vic Bonilla
AI: Multiple Sclerosis
HSCT: Oct 2020
Superpower: unbreakable resolve

Have you ever felt like an observer of your life? Have you stared down the barrel of mortality? Is the patience you have with others, the same, greater, or less than the patience you have with yourself? 

Within a few months of being diagnosed with multiple sclerosis, Vic was connected with someone who was transplanted in Russia ten years ago and immediately began researching HSCT. Once he made his way to Clinica Ruiz for his treatment, he and his brother tested positive for COVID and opted to quarantine in Mexico before returning to Clinica Ruiz for HSCT. By this time, Vic’s brother needed to return to the US, and thankfully Vic was able to hire a caregiver.

Tune in to learn more about Vic’s experience with his caregiver in Puebla, his journey with the MS symptoms that caught him by surprise, his extensive research into HSCT, how things are faring nearly six-months post-HSCT, and the unexpected outcomes he continues to enjoy.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit Chloe’s inspiration to increase awareness, and stay active and sane, despite COVID (S6 replay)

Warrior: Chloe Zallen
AI: Relapsing-remitting multiple sclerosis
HSCT: Oct/Nov 2020
Superpowers: self-love

Are you able to recognize your limitations? Are you aware of your stressors?

As a traveling cardiac specialist with experience at several hospitals, Chloe found herself in an extremely stressful environment with a lot of fear incited by the uncertainties of her MS. When she suddenly had numbness along the entire right side of her body, she began googling her symptoms and weighing the possibilities while awaiting the results of an MRI. Though she received a diagnosis soon thereafter, nearly every neurologist she consulted encouraged the same disease-modifying therapy and after researching the side effects, Chloe opted instead to adopt special diets and a natural path to managing her symptoms. 

Tune in and learn more about how Chloe found complete relief from her symptoms while away in New Zealand, find motivation to be your own advocate, and how she found her way to HSCT despite doctors’ and friends’ concerns that she would die. Hear more about her experience in Monterrey and how she was able to stay active and sane despite the global pandemic.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit Christy’s journey to Monterrey and learn more about the power of connections (S6 replay)

Warrior: Christy Miller Kuziensky
AI: Multiple Sclerosis
HSCT: February 2021 in Monterrey
Superpowers: patience and trust in Clinica Ruiz

Have you been fortunate enough to find confidence in your big decisions? How has patience served you along your journey? Are you comfortable showing up with no expectations?

With arm numbness that led to her diagnosis at the age of 24, Christy experienced some time without many MS symptoms and was doing her best to be adventurous and live a full life. Until she found herself in the outback of Australia for an outdoor teaching experience, hit with a terrible flare and optic neuritis that forced her on a return flight to the US within 24 hours. As an avid believer in the body’s capacity to heal itself, Christy spent two decades pursuing natural therapies to treat her MS symptoms, including acupuncture, Qi Gong, tapeworms, and bee sting therapy.

Tune in to learn more about how Christy found HSCT and faced her doubts to fundraise her way to Clinica Ruiz in Monterrey. With great tips for narrating her 26 year journey with MS avoiding disease modifying therapies and generating support for her treatment, Christy’s journey helps to reinforce the power of networking and sharing connection with others.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Clinica Ruiz: https://hsctmexico.com
HSCT Warriors: https://HSCTWarriors.org

Reconnect with Ovi on her way to Puebla and learn what it means to be strong-strong (S6 replay)

Warrior: Ovi James
AI: Multiple Sclerosis
HSCT: February 2021
Superpower: mindset

How well do you navigate self advocacy?

After years of terrible headaches and issues with standing and walking, Ovi ended up losing her job and her home which caused significant relapses that rendered her disabled. As a single mother, Ovi’s goal was to focus on the positive and help her son “see the light at the end of the tunnel” even though she struggled to understand everything that was going on as her family chose not to support her. With the support of various shelters and physical, occupational, and mental health therapies, Ovi was able to focus on healing and learning how to better advocate for herself. She eventually found a rheumatologist who was able to see she was struggling with more than fibromyalgia and scheduled the MRI that led to her multiple sclerosis diagnosis.

Although this interview occurred the weekend that Ovi was preparing to head to Clinica Ruiz in Mexico, it is airing while she is currently undergoing treatment and could use continued support from our HSCT community. Tune in and learn more about Ovi’s journey and how she found strength in being properly diagnosed, and keep such a positive outlook on life and how she turned inward to focus on her gifts in order to actualize the possibilities of pursuing HSCT.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Social media YouTube: @ovijames and Instagram: @itsovijames
Clinica Ruiz: https://hsctmexico.com
HSCT Warriors: https://HSCTWarriors.org

Reconnect with Lynn and gain insights on the nuances of CIDP (S5 replay)

Warrior: Lynn Rogers
AI: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
HSCT: hopeful 
Superpower: widened lens

Have you ever worried about asking people for help when their investment isn’t a sure thing? How do you define barriers to treatment for your autoimmune disease?

As a triathlete, crossfit-er, and marathoner preparing for an Ironman race, imagine the frustration when Lynn found herself paralyzed after two weeks of testing that led to no answers. Having a career in biomedical engineering with a focus on helping individuals with motor-recovery, Lynn was very surprised to find herself struggling with the same acute neurological issues as her patients.  

Tune in to learn more about her journey with symptoms that were not “textbook” and how the diagnostic testing not designed to pick up subtleties rendered her borderline, ultimately prolonging a diagnosis. Learn more about Lynn’s efforts to find answers and collaborate with her doctors over the course of three years to develop a plan of action that is leading her to pursue HSCT. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Clinica Ruiz 
https://hsctmexico.com

Revisit Sagirah’s commitments in defining success with HSCT (S5 replay)

Warrior: Sagira Ahmed Norris
AI: Multiple Sclerosis
HSCT: January 2020
Superpower: flexibility

Are you someone who prefers to schedule a plan for every detail in life?

After first being diagnosed, Sagira found herself more driven than ever to complete life goals ahead of schedule while she was able, including travel to foreign countries to run marathons. Once her symptoms began matching what her doctor projected for her years down the road, she happened upon HSCT by chance while in Europe. After returning home, Sagira did more research and then talked with her doctor, only to be told that HSCT wasn’t an option for her, particularly the kind of HSCT that involved leaving the country.

Tune in to learn more about how Sagira defined her path to HSCT, the flexibility she gained throughout her experience, and whether she qualified for the Boston Marathon even before her one-year HSCT birthday.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
HSCT Warriors, Inc.

Revisit our chat with Brooke Slick about managing setbacks post-HSCT (S5 replay)

Warrior: Brooke Slick
AI: Multiple Sclerosis
HSCT: 2013
Superpower: surrender

Are you able to surrender to all that seems out of your control? How easy is it for you to allow things to just happen?

Revisit Brooke’s journey to HSCT and learn more about the setbacks she has faced post-HSCT, (including surgeries for trigeminal neuralgia) but also the influence of mindset, and the inspirations she has found with persevering in her battle with MS beyond HSCT. 

Tune in to check-in with our dear friend, Brooke and hear more about how she continues to support others along their journey to HSCT and celebrate the gifts of community and service to others. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

Reconnect with Felicia and how she fought against the odds and COVID to pursue HSCT (S5 replay)

Warrior: Felicia Merritt
AI: Progressive Multiple Sclerosis
HSCT: August 2020
Superpower: Feeling invincible

Have you ever suddenly realized just how much you were taking for granted? Have you been able to find internal strength? What about internal peace?

Shortly after turning 30, Felicia began experiencing vision issues and weakness. Following an intense crossfit workout, Felicia hoped she could laugh things off until she checked herself into the hospital. Her doctors referred her to Ohio State University and once surrounded by a medical team for a few days, Felicia was diagnosed with multiple sclerosis in 2018. 

Tune in to learn more about HSCT despite COVID and details about the level of detail, treatment and care Felicia received at Clinica Ruiz, and all that she has gained in just the first couple of weeks post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit our catch-up with Marlo, who persevered despite a super twisted path to HSCT (S5 replay)

Warrior: Marlo Kalb
AI: Relapsing Remitting Multiple Sclerosis
HSCT: confidence to fight back
Superpower: 9.30.19

How will you face the many curves that lie ahead?

Diagnosed at just 13 years old, Marlo found herself eager for HSCT after doing research and listening to this podcast. First interviewed as a HSCT Hopeful during Season 2, Marlo shared her journey to become the first person transplanted in Boston. After facing administrative issues, delays, and opinions not favorable to her candidacy, tune in to learn more about how Marlo faced the multiple twists and turns that eventually led her to Clinica Ruiz. Join us in celebrating Marlo’s one-year stem-cell birthday and how HSCT has impacted her after spending 13 years living with MS.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Meet Mendo and the positive mindset he embraces, thanks to HSCT (Ep. 84)

Warrior: Mendo Micevski
AI: Primary Progressive Multiple Sclerosis
HSCT: June 2021
Superpower: Mindset

Are you someone who prefers to live in the shadows? How well do you notice the ‘chalk and cheese’?

After years of noticing odd symptoms that doctors could not figure out, Mendo was walking to dinner one Saturday evening when his vision became blurry and doubled in his left eye. The following day he visited a specialist’s hospital in Melbourne where the doctor noticed inflammation of his optic nerve, suggested it could be multiple sclerosis, and encouraged him to get an MRI. After receiving the diagnosis in 2005, Mendo was in a bit of shock as he was unfamiliar with the disease, aside from commercials about the medications that depicted people in a wheelchair.

Tune in to learn more about the slow decline that Mendo experienced, how he learned that HSCT might be an option for him (though not in Australia), his journey to Russia, his experience during HSCT and returning to quarantine in Australia, and how he is faring and all the differences he is noticing at 10 months post-transplant. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Meet Stacy and learn from reflections as she celebrates her third stem cell birthday (Ep. 83)

Warrior: Stacy McNall
AI: Primary Progressive Multiple Sclerosis
HSCT: May 14, 2019
Superpower: being still

Are you someone who trusts the process? How do you handle the need to slow down? Are you able to find calm among the storm?

As a very active person who “lived in overdrive” as a nurse practitioner and marathoner, Stacy tended to set aside the symptoms she experienced for nearly 18 years before she was diagnosed. During her 14th marathon, Stacy tried her best to get moving but her legs would not cooperate and she finally went to see a doctor. After trying several disease-modifying therapies that did not seem to help, Stacy looked further into HSCT while she was hospitalized with a relapse and was successful enrolling in the clinical trial at Northwestern just before it ended.

From relapses to support from reiki masters, to issues with insurance, to reactions during the stem cell transplant including a blood clot, psychosis, and extreme nausea, Stacy seems to have experienced everything along the HSCT rollercoaster. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule a time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.


Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Reiki
Myofascial release
Vibration plate

Continue learning from Carolyn’s insider perspective with HSCT at Cleveland Clinic (Ep. 82 part 2)

Warrior: Carolyn Deming
AI: Multiple Sclerosis
HSCT: scheduled May 11
Superpower: blatant honesty

Do you ponder problems or possibilities? What is your approach to finding the right mindset? How do you advocate for what you know you need?

Picking up where we left off last week, tune in to hear details about Cleveland Clinic’s transplant care team, facilities and gain ideas for strategies to advocate for the support you need from doctors, especially throughout the HSCT experience.

Tune in to learn more about how “the power of options” has been incredibly supportive for Carolyn, some of the latest MRI technologies at Cleveland Clinic, their reverence for stem cells, and Carolyn’s insider’s perspective. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Carolyn’s blog: Mychroniclibrary.com
Cuddle clone
Matt Haig books

Be inspired by Carolyn’s insider perspectives as she pursues HSCT at the Cleveland Clinic (Ep. 82 part 1)

Warrior: Carolyn Deming
AI: Multiple Sclerosis
HSCT: scheduled May 4
Superpower: blatant honesty

Do you ponder problems or possibilities? What is your approach to finding the right mindset? How do you advocate for what you know you need?

After experiencing significant eye pain but no other symptoms, Carolyn was “utterly stunned” to be diagnosed with multiple sclerosis on her 32nd birthday. Her first significant relapse occurred just five months after. Having started a disease-modifying therapy that gave her flu-like symptoms, it wasn’t long before she carved her own path forward through several DMTs and emotions tied to the entire experience of chronic illness that led her to pursue HSCT.

Tune in to learn more about how “the power of options” has been incredibly supportive for Carolyn, some of the latest MRI technologies at Cleveland Clinic, their reverence for stem cells, and Carolyn’s insider’s perspective. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Carolyn’s blog: Mychroniclibrary.com
Cuddle clone
Matt Haig books

Explore the nuances of functionality with Charissa and her physical therapist, Dr. Gretchen Hawley (Ep. 81)

Warrior: Charissa Rigano
AI: Multiple Sclerosis
HSCT: December, 2020
Superpower: self-confidence

How committed to functionality are you? Are you aware of integrated, holistic approaches to health? How secure are you with confidence? 

In our first tandem interview, meet HSCT Warrior Charissa and physical therapist, Dr. Gretchen Hawley, who have been collaborating throughout Charissa’s experience with multiple sclerosis. Dr. Hawley committed to specializing in multiple sclerosis and, in consideration for the challenges that any particular day might introduce to someone battling autoimmune disease,  to making her services and support more accessible and available to her clients. Charissa met Dr. Hawley years prior and reconnected with her upon returning home from Clinica Ruiz for HSCT.

Join us to learn more from the professional perspective about the nuances of neuroplasticity, and specialization of physical therapy for autoimmune disease, as well as to hear comparisons from the patient perspective on the experiences with dedication to “move it or lose it” in order to support wellness for the next decades.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
www.msinglink.com
Instagram: Dr.Gretchen
Facebook: MS Wellness and Support with Dr. Gretchen PT
Youtube: DrGretchenHawley

Continue along Joceline’s journey to HSCT in Moscow and learn how recovery is going (Ep. 80 part 2)

Warrior: Joceline
AI: Multiple Sclerosis
HSCT: March 29, 2021
Superpower: tenacity

How often do you reflect on all that is happening? Do you ever consider yourself from the inside-out? How do you find patience?

Last week we reconnected with Joceline, who we first met in Season 6 while she anxiously awaited hearing about when she might be able to schedule HSCT in Moscow, as she was not eligible in her home in the UK. A bit over one year ago, she was finally able to secure a visa and travel through Turkey before arriving at the AA Maximov hospital in Moscow. In last week’s episode, we learned about her experiences getting to, and during her stay in the hospital. Tune in this week to pick up where we left off last week and learn how Joceline fared during her return home, including how “out of this world difficult” the first three months home were, and how recovery has been going since she got home.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk to a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Joceline’s YouTube channel: https://www.youtube.com/channel/UC5WIASLGre2XkMgQV2LhOBA/videos

Check-in with Joceline and celebrate her journey to HSCT in Moscow last year (Ep. 80 part 1)

Warrior: Joceline
AI: Multiple Sclerosis
HSCT: March 29, 2021
Superpower: tenacity

How often do you reflect on all that is happening? Do you ever consider yourself from the inside-out? How do you find patience? 

When we first met Joceline in Season 6, she shared concerns over the COVID variant in the UK that had delayed her acquiring a schedule to begin HSCT at the AA Maximov hospital in Moscow. Nearly one year since we last spoke, Joceline celebrated her one-year stem cell birthday and joined us to share details about how she finally made it to Moscow, through pre-testing, and underwent the transplant while connecting with other patients to pass the time before isolation. Tune in to hear how she embraced the chemo, despite unexpected side effects from the chemo, including dizziness and immediate onset of menopause. Learn more about how isolation did not go as planned for Joceline, and how she established gentle boundaries to support herself through the unexpected depression that ensued during isolation.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Meet Eric to learn from his quick pursuit of HSCT after diagnosis despite the pandemic (Ep. 79)

Warrior: Eric Saperstein
AI: Multiple Sclerosis
HSCT: July 5, 2020
Superpower: Speed (to HSCT)

Are you someone to live in the present, or anticipate the future? How do you know what’s going to help you? Where do you find hope?

After experiencing trigeminal neuralgia and receiving an MRI that diagnosed him with MS, Eric consulted with two different neurologists. Rather than discussing the efficacy of his options, one doctor encouraged him to decide which medicine to try based on a bag of marketing materials, and another doctor suggested he choose based on whether he wanted to take a pill or give himself injections. Despite knowing several people diagnosed with multiple sclerosis and consulting with a family friend who is a neurologist, Eric only learned about HSCT by conducting his own research. 

Tune in to learn more about when and where Eric chose to pursue HSCT, the resources available to him during treatment, including a cure for the 9 hour bout of hiccups that he experienced as a side-effect of the chemo, and how he’s faring post-HSCT as he commits to supporting his gut health by eliminating mycotoxins. Please forgive the ‘ghost in the machine’ interference throughout this episode…  

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
HSCT and Cellular Therapies for Autoimmune Diseases (Burt, Farge, Ruiz, Saccardi & Snowden, 2022).

Learn more from Jan-Marie along her recovery rollercoaster and find hope (Ep. 78)

Warrior: Jan-Marie
AI: Multiple Sclerosis
HSCT: June 16, 2020
Superpower: Hope

What do you think is happening? How do you advocate for yourself when seeking answers?

Nearly immediately after HSCT, Jan-Marie experienced significant improvements with her balance and walking and knew in her heart that HSCT worked to halt progression. So, when Jan-Marie began experiencing new challenges, pain, and neurological issues at just 5 months post-HSCT, she became very determined to find answers. Although her doctors insisted that the multiple sclerosis had returned, Jan-Marie had a feeling that what she was experiencing was in fact very different from multiple sclerosis. Tune in to learn more about the variety of options that Jan-Marie pursued, from a top-off of chemo to spending a month in the hospital for nearly every test imaginable, including two MRIs that showed no MS-related activity.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

Hydrafil Feasibility Study by RegelTec

Talk to a Warrior at HSCTWarriors.org

Celebrate the start of spring and check-in with Ali at 4+ years post-HSCT (Ep. 77)

Warrior: Ali Roberts
AI: Multiple Sclerosis
HSCT: November 6, 2017
Superpower: Gratitude

How happy are you with what is happening today? Where are you along the journey with acceptance? How do you live your best life?

The beginning of a new season offers the opportunity to check in with Ali at the four-year mark of HSCT recovery. Tune in to learn more about how Ali has navigated psychological and emotional wellbeing and learn how she found a way to accept all the changes that come along with the long process of healing damages incurred by multiple sclerosis including the invisible aspects of orthorexia, finding alternative exercises to promote bone and muscle strength, and exploring supplements that can support our well-being. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:

The MS Gym

Reconnect with Michelle and be inspired to pursue decisions you feel are right (S5 replay)

Warrior: Michelle Webb
AI: Relapsing-Remitting Multiple Sclerosis
HSCT: 5/19
Superpower: Compassion and understanding

Are you someone to believe that everything happens for a reason? How often does your experience with disease cancel plans with friends and family? How often are you kind to your body and mind?

After realizing the eighth disease modifying therapy she tried (since 2011) wasn’t helping her feel any better, Michelle began looking into options. As a person who doesn’t trust blindly, hear more about how Michelle – also, a high school friend of Jen’s – gained information when she found herself seeking guidance about next steps, and found the courage to move forward despite her doctor’s opinion.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

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Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
HSCT Warriors, Inc.
Northwestern Memorial Hospital

Revisit our first conversation with hopeful DeWayne as he pursued the BEAT-MS trial (S5 replay)

Warrior: DeWayne Durr
AI: Relapsing-Remitting Multiple Sclerosis
HSCT: scheduled for September, 2020
Superpower: prayer and understanding

How comfortable are you with difficult or impossible situations? How direct are you about the care you receive from your doctors? When faced with the chance of being randomly assigned to receive HSCT, would you feel conflicted?

After DeWayne researched the disease modifying therapies available to him, he chose to clean up his diet and forgo drugs, as he had also researched HSCT and barely missed the chance to be treated by Dr. Burt in Chicago before he closed the clinical trial. Tune in to hear more about how DeWayne advocated for consideration for the BEAT-MS trial at the Cleveland Clinic and the winding path to get there despite other doctors’ opinions, the details of participating in the clinical trial, and COVID. Learn how DeWayne managed to secure insurance coverage and approval to be the first patient to be treated at Cleveland Clinic off-trial for multiple sclerosis.

Tune in and learn more about how DeWayne managed to secure insurance coverage and approval to be the first patient to be treated at Cleveland Clinic off-trial for multiple sclerosis.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Check-in with Ron along his recovery rollercoaster and be inspired by his positivity and perseverance (S5 replay)

Warrior: Ron Gabrielli
AI: Multiple Sclerosis
HSCT: 5/6/17
Superpower: Hope

How inspired are you to help others? How important are caregivers in your journey with disease?

After enjoying such an incredible experience at Clinica Ruiz, Ron and his wife have spent countless hours connecting with individuals to answer questions and share support to help people make informed decisions about HSCT. While all Ron cares about is paying forward the support he received in his experience, he joins so many others post-HSCT who question the systems that keep HSCT out of reach for so many. 

Tune in and learn more about the various strategies that Ron has tried out during his three-plus years of recovery, how he managed to check his pride, and all the hope he holds on to as he continues reconciling with the realities of recovery. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources: 
Tao Patch
Ex N Flex

Reconnect with Chelsey and be inspired to move, live and prosper (S5 replay)

Warrior: Chelsey Bell
Autoimmune: RRMS
HSCT: 7/11/18
Superpower: Self awareness

How often do you find time to reflect on what works for your body? Have you been able to truly appreciate time with yourself? How does it feel to connect with someone else over commonalities?

Sharing insights to her solo experience getting to Moscow, Chelsey offers so much inspiration for the importance of mindset, taking time to figure out what works, and finding lessons from her younger self, and accepting challenges without holding on to frustration. With updates on her fundraising experience and securing an Alinker to promote her recovery, Chelsey shares an abundance of wisdom and resources.

Tune in to hear more about Chelsey’s journey to Moscow for HSCT and how she is faring after two years post-transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map of HSCT locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Eye mask
Alinker
Nonprofit: Move, Live, Prosper
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Revisit our chat with Jan-Marie, one of the first to receive HSCT amidst the pandemic (S5 replay)

Warrior: Jan-Marie Morgan
AI: Multiple Sclerosis
HSCT: June, 2020
Superpower: Patience

How often do you take doctors’ first opinions without questioning? How often do you take time for self-care?

Not only does Jan-Marie set a shining example to approach life with optimism and positivity, she offers insight into what it’s like to research scientific evidence to inform opinion, foster support both emotionally and financially, and gain confidence to pursue HSCT during the COVID pandemic. As a nurse practitioner by trade, Jan-Marie used her training in evidence-based medicine to be informed about her options with disease modifying therapies that ultimately did not work. After finding herself frustrated and hopeless with the progression of her multiple sclerosis, Jan-Marie was introduced to HSCT by a girlfriend and within hours completed the application, and in days secured a schedule.

Tune in to hear more about Jan-Marie’s journey to HSCT, changes to the typical experience in Monterrey at Clinica Ruiz for COVID, and how Jan-Marie is faring the first few weeks post-transplant.Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well.


Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Calm app

Reconnect with Graciela along her journey to HSCT in her hometown of Monterrey (S7 replay)

Warrior: Graciela
AI: Multiple Sclerosis
HSCT: January 2021
Superpower: value for life

How do you find peace of mind? Do you feel supported by family and doctors? How do you explore purpose in life?

After initially being told her symptoms were all in her head, Graciela received an apology from her neurologist along with her diagnosis. She was presented with options for treatment including disease modifying therapies and the extreme option of HSCT. When she further explored HSCT as an option, she learned that Clinica Ruiz offered the treatment in her hometown of Monterrey and she immediately connected with family to learn more.

Tune in to learn how Graciela kept a positive attitude and mindset to help her take on anger, fear of the unknown, thyroid issues, and covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Connect with Ali and celebrate launching season 10 of the podcast (ep. 95)

Warrior: Ali Strong
AI: Multiple Sclerosis
HSCT: November, 2017
Superpower: Acceptance

What do you do for yourself that brings you joy? Are you someone who accepts moderation? To what extent do you find balance in life?

Check in with Ali Strong to recount her experience finding her way to and through HSCT and learn how she is feeling now at more than five years post-transplant, including her struggles with menopause, disordered eating, and mental health. Join Ali and Zen Jen in discussion about Dr. Burt’s latest book and what’s to come with the podcast.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit Amy’s preparation for HSCT and be inspired to move beyond judgment (S7 replay)

Warrior: Amy Capel
AI: Multiple Sclerosis
HSCT: scheduled for October 2021
Superpower: Thinking

What is your response to the judgment of others? To what extent do you control your mindset? Are you committed to eliminating negativity?

When Amy was first diagnosed with multiple sclerosis, she not only struggled to understand the disease, she ended up struggling with a storm of negative side effects from the first medication she tried. Having a friend who went through HSCT five years ago, tune in to learn more about why Amy is just now pursuing HSCT, how she is navigating the opinions of her doctors, and how she is committing to making the best decisions for herself and her family. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.