#cidp #guillianbarre

Meet Lynn and how the nuances of CIDP led her to pursue HSCT (Ep. 57)

October 14, 2020 — Leave a comment

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.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
https://hsctmexico.com

Learn more from Chris about the challenges of CIDP and diagnosis by exclusion (replay from S2)

May 27, 2020 — Leave a comment

Snowflake: CIDP (chronic inflammatory demyelinating polyneuropathy)
HSCT: August 14, 2018
Superpower: ability to walk again

Have you ever lingered on the brink of life? Or wondered why diagnosis by exclusion takes so long? How much energy would you have to spin your wheels?

Replay Chris

Meet Chris, a physical therapist familiar with physical movement, injury, and the understanding that when numbness, tingling, and pain consumed his abilities to move, he needed to fast-track some answers. Despite the shuffle from doctor to doctor without diagnosis, once his body completely shut down while driving to work, Chris and his wife knew they had to find their own answers and fully adorn the role of advocacy.

Tune in to learn more about the back-and-forth Chris experienced along his path of diagnosis with CIDP that led him to HSCT, the concern for others struggling to find the right diagnosis, the importance of self-advocacy, and the spirit of hope in sharing awareness.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

Resources noted:
GBS/CIDP Foundation: https://www.gbs-cidp.org/

HSCT Warriors Podcast · Learn more from Chris about the challenges of CIDP and diagnosis by exclusion (replay from S2)

Join caregiver Tamra in finding resiliency to face the whirlwind (Ep. 33)

October 9, 2019 — 1 Comment

Warrior: Tamra Minch
AI: MS Caregiver
HSCT: April 7, 2019
Superpower: Humility

Are you able to make time for yourself when caring for others? When faced with the whirlwind of life, what do you focus on? How does resiliency inform your outlook?

HSCT Warriors Podcast Ep. 33 (1)

When her husband was first diagnosed with multiple sclerosis, the whirlwind experience suddenly had Tamra searching for answers and alternatives to the pharmaceuticals that only guaranteed harsh side effects with terrifying probabilities. After learning more and connecting with individuals that had gone through HSCT, Tamra’s husband decided to take the leap and forgo medications to pursue HSCT. 

Tune in and learn more about their fundraising efforts to get to Clinica Ruiz, the turnabout to pursue treatment in Chicago, and how Tamra provides support to others in the HSCT family.

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.

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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 immediately.