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

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)

Revisit inspiration from Tamra and find resiliency among the uncertainty (replay from S3)

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 uncertainties in life, what do you focus on? How does resiliency inform your outlook?

Replay Tamra (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.

_________________________________

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 some great reasons to smile along Tracey’s journey with HSCT (replay from S3)

Warrior: Tracey Rossi
AI: Multiple Sclerosis
HSCT: August 2018
Superpower: Motivation

Are you looking to fit all the HSCT pieces together? What is your outlook on life? How often do you choose to turn a frown upside down? 

Replay Tracey

As a former surfer, Tracey became an expert in finding balance and going with the flow. Having lived with the MS monster since 2009, Tracey was shocked when Dr. Burt was surprised enough by her symptoms to expedite her enrollment in the MOST clinical trial. Tune in and hear the latest updates from Chicago when Tracey was seen for her one-year follow-up in August.

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.

HSCT Warriors Podcast · Revisit some great reasons to smile along Tracey’s journey with HSCT (replay from S3)

Revisit Allison’s courageous journey to HSCT and her efforts to spread hope and awareness

Warrior: Allison Carr
AI: Multiple Sclerosis
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 even have accurate information about HSCT? 

HSCT Warriors Podcast Ep. 47 (2)

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.

 

Revisit Keri’s remarkable journey and be inspired to persist in self-advocacy

Warrior: Keri Huff
AI: Tumefactive multiple sclerosis
HSCT: July/August, 2010
Superpower: Self-advocacy

When you try to advocate for your health and doctors turn you away, how do you persist? Have you ever reflected on how much time you have? Where do you find beauty each day?

HSCT Warriors Podcast Ep. 46 (1)

At just 28 years old, Keri started experiencing odd symptoms that countless doctors ignored and dismissed. As she persisted through debilitating pain and extreme fevers, an MRI finally evidenced several masses on her brain. After persisting through additional testing and a ten hour brain surgery, she learned she was pregnant but did not walk away with a diagnosis.

When her masses eventually returned, she continued fighting for answers and connected with Dr. Burt at Northwestern. Sharing her remarkable journey battling multiple autoimmune diseases, be inspired to learn how Keri fought for ten years struggling to find answers and relief from her pain as a one in 20,000,000 statistic, only to face death with the possibility of 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. 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.

 

Revisit lessons of gratitude and positivity with Ali Strong

Warrior: Ali Strong
AI: MS
HSCT: 11/6/17
Superpower: Gratitude

Where do you find yourself bringing attention in life? Are you able to find goodness with your current state of being? What have been your most important lessons in life? 

HSCT Warriors Podcast Ep. 45

Embrace a shift from the typical podcast interview and listen in on Jen’s conversation to check in with Ali Strong on her HSCT journey, and share more about the new nonprofit, HSCT Warriors, Inc. for which Ali serves on the Advisory Board. Tune in and be inspired to integrate strategies that calm the mind and nerves, and be encouraged to find ways to shift the sense of control, or make time in a busy day to nourish yourself.

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 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 Eileen’s positive mindset and learn more about the HSCT rollercoaster

Warrior: Eileen
Snowflake: Multiple Sclerosis
HSCT: 01/05/17
Superpower: Knowing you have the rest of your life to look forward to

How much fear do you have when facing uncertainty? How do you adjust when riding a roller coaster? What does normal even feel like?

HSCT Warriors Podcast Ep. 42 (1)

Despite years of debilitating fatigue and cycling through nine different disease modifying therapies, Eileen had a suspicion that someday, stem cells would help alleviate her pain. After researching the possibility of stem cells on her own, she found immediate support from her neurologist to pursue HSCT at Northwestern in Chicago.

Tune in to hear more about her experience of living with MS for twenty years, changes experienced post-HSCT, and learn more about the recovery roller coaster that has been life changing for Eileen.

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:
Yogaglo
Myofascial release

_________________________________

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.

Join Barry in finding confidence to halt his MS and champion HSCT as a treatment option (Ep. 36)

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

How do you place a value on health? 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?

HSCT Warriors Podcast Ep. 36

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 insight to the latest at Northwestern and updates about the signature “Talk to a Warrior” program of the HSCT Warriors, Inc. nonprofit.

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.

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

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.

_________________________________

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.

Share in all the reasons to smile along Tracey’s journey with HSCT (Ep. 31)

Warrior: Tracey Rossi
AI: Multiple Sclerosis
HSCT: August 2018
Superpower: Motivation

Are you looking to fit all the HSCT pieces together? What is your outlook on life? How often do you choose to turn a frown upside down? 

HSCT Warriors Podcast Ep. 31

As a former surfer, Tracey became an expert in finding balance and going with the flow. Having lived with the MS monster since 2009, Tracey was shocked when Dr. Burt was surprised enough by her symptoms to expedite her enrollment in the MOST clinical trial. Tune in and hear the latest updates from Chicago when Tracey was seen for her one-year follow-up in August.

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 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.