#persistence

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

June 22, 2022 — Leave a comment

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.

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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.

Revisit Barry’s journey to HSCT nearly 20 years post-transplant (S3 replay)

September 8, 2021 — Leave a comment

Warrior: Barry Goudy
AI: Multiple Sclerosis
HSCT: August, 2003 at Northwestern in Chicago
Superpower: Belief

When it comes to solutions for your experience with disease, how do you determine whether a treatment is good enough? How far are you willing to go with research? How do you place a value on health?

Despite the devastation after initially failing requirements for the clinical trial protocol, Barry remained persistent to receive HSCT. Once he was accepted for a new study protocol, Barry geared up for halting the progression and enjoyed such a great experience that he has become an ongoing champion for HSCT. 

Tune in and hear more about how he tried his best to broadcast the hope and opportunity of HSCT with others, and even testified in front of the United States Congress. This final episode of Season 3 also offers updates about the signature “Talk to a Warrior” program of the HSCT Warriors, Inc. nonprofit.

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. 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 reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, leave us a comment on instagram or share feedback on our website. We appreciate all your support, and if you’re looking to contribute in other ways – including volunteering or monetarily – we’d love to hear from you. 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 immediately.

Revisit Allison’s journey to HSCT and pave your path to hope and awareness (S3 replay)

July 14, 2021 — Leave a comment

Warrior: Allison Carr
Autoimmune Disease: MS
HSCT: 2014/15, Northwestern Memorial, Chicago IL
Superpower: Survival

To what extent do your doctors have your best interest in mind? Does the medical community you depend on have accurate information about HSCT? 

After suffering symptoms without a diagnosis for twenty years, Allison felt completely ignored by her medical community. As a busy mom in a busy career with a busy life, Allison didn’t find much time for her diagnosis of multiple sclerosis, let alone the frightening side effects of pharmaceuticals. Despite the opinions of multiple doctors, when family friends connected her to the possibility of HSCT in a clinical trial, she did her research and pursued HSCT without hesitation.

Tune in to hear the lessons learned as Allison survived a see-saw insurance battle, challenges to her marriage, and what happened when Allison realized that the little she knew about HSCT was more than what her doctors knew or willing to learn. In listening to Allison’s journey, we hope you’ll be inspired to become your own self-advocate and join her in efforts to spread hope and awareness.

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. 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 reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, 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 immediately.

Continue along Joceline’s journey and learn the practice to work-around covid (Ep. 62 part 2)

March 10, 2021 — Leave a comment

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

Meet Felicia and learn how she fought against the odds and COVID to pursue HSCT (Ep. 54)

September 23, 2020 — 1 Comment

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.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:
Facebook blog page

Catch-up with Marlo, an HSCT hopeful who persevered despite a super twisted path to HSCT

September 16, 2020 — Leave a comment

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

When you encounter setbacks, how do you find your way forward? What are the skills required to persist and persevere? 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 in anticipation to become the first person transplanted at the Dana Farber Cancer Institute in Boston. After facing administrative issues, delays, and opinions not favoring her candidacy for HSCT, 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.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:
Clinica Ruiz
HSCT Warriors, Inc.