Be inspired by Keri’s remarkable journey to persist in self-advocacy (Season 3, Ep. 2)

Warrior: Keri Huff
AI: Tumefactive multiple sclerosis
HSCT: 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. 26 (2)

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.

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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.

Kick off the third season with an update from 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? 

season 3 promo

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.

 

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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.

Revisit the launch of AIMS, the world’s first HSCT charity

Snowflake: AIMS Charity, UK
HSCT: MS Caregiver, Alison
Superpower: Dedication

Have you considered the possibilities of traveling abroad to pursue HSCT to halt your autoimmune disease? Are you striving to overcome obstacles like funding or researching HSCT? How do you turn a challenge into opportunity for others?

Copy of HSCT Ep 2-3 Alison Coates

Meet Alison, a caregiver for her warrior husband who was diagnosed with multiple sclerosis in 2010 and experienced significant declines in a short time. Once they determined HSCT would be the best avenue for treatment, they struggled to be accepted to their local clinic in the United Kingdom. After fundraising to pursue HSCT at Clinica Ruiz in Puebla Mexico, they were finally accepted for treatment in the UK and allocated the dollars already raised to begin AIMS; the world’s first charity to support individuals in their pursuit of HSCT.

Tune in to learn more about how Alison came to co-found AIMS, the world’s first registered charity to support UK residents with Autoimmune Disease and Multiple Sclerosis, with an emphasis on HSCT.

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:
AIMS Charity
Symptom Checker
Clinica Ruiz, Puebla, Mexico
Aa Maximov Hospital, Moscow Russia

 

Replay this live interview of Zen Jen hostessed by friend Sara Leah

Warriors: “Zen” Jen & Sara Leah
Snowflake: RRMS
HSCT: October 18, 2017 at Northwestern Memorial Hospital
Superpower: Zen

Do you embrace life’s challenges with open arms? One step at a time? As you find a way along your journey, do you pause to reflect in the moment and express gratitude for those who are with you?

Replay with Jen and Sara

Learn more about the journey of our very own “Zen” Jen, as she shares the mic for a chat with her dear friend Sara Leah and they find commonalities in their unique experiences with MS. With a fun break from the usual interview, enjoy this conversation from the lens of someone curious to know more about HSCT, and in celebration of Jen’s one-year HSCT birthday.

Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to host this interview live in the Belfry; especially for his efforts to create the soundtrack, record, edit, and perfect 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.

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #MultipleSclerosis, #MSWarrior #HSCTsnowflakes, #HSCTsuperpowers

Resources:
haltmyms.com
hsctwarriorspodcast.com
HSCT at Hoxworth Blood Center, University of Cincinnati
HSCT at Clinica Ruiz, Puebla Mexico

 

Revisit this recent episode with Chris for CIDP awareness month

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?

HSCT Ep 2-4 Chris Masters(1)

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/

Rewind to hear Denise’s experience with HSCT for Stiff Person Syndrome

Have you ever found yourself distracted by concern for the people in your life that are stressed about your condition? Do you question whether the resources you find when researching your condition are of comparable quality to the resources your doctors can access? Have you learned how to embrace the courage to make your own decisions in healthcare? Tune in and revisit the fifth episode featuring Denise’s experience with HSCT for Stiff Person Syndrome:

Copy of HSCT Ep 2-12 Dave

Season 2, Ep. 12: Join Dave to learn strategies for HSCT recovery and hear exciting updates

Snowflake: Multiple Sclerosis
HSCT: 09/11/17
Superpower: New perspective

What is your potential for recovery? Do you have strategies to support your self in recovery? What mindset keeps you engaged? Join us in this last episode of Season 2 and catch up with Dave, learn strategies for recovery, and hear exciting updates!

HSCT Ep 2-12 Dave.png

As his positive outlook on HSCT has carried forward to influence his perspective on life, Dave continues to experiment on how his post-HSCT body will react to the challenges of moving to a different climate, raising a toddler, and changing jobs. Tune in to learn more about the strategies that he incorporates to make time to intentionally support his progress in recovery and wellness.

As Season 2 of the podcast closes with this episode, be sure to listen for exciting new updates about the launch of HSCT Warriors, Incorporated – a nonprofit organization founded by HSCT Warriors to promote awareness of HSCT as a treatment option for autoimmune diseases through education, outreach, advocacy, and personal connections.

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 to revisit an episode highlighting a HSCT Warrior from the first season. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

Resources noted:

HSCT Warriors, Incorporated

#MS, #multiplesclerosis, #autoimmunedisease, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers, #newnormal, #adjustment, #positivemindset, #positivity, #positivevibes, #advocacy, #selfadvocacy, #advocate, #HSCTforMS, #HSCTWarriors, #HSCTWarriorsPodcast, #Podcast

Season 2, Ep. 11: Join Bethany on her 15 year tenure with HSCT and helping others navigate our broken system

Snowflake: Multiple Sclerosis
HSCT: 03/08/05
Superpower: Heightened awareness

When you need a different course of action, how long will you bide your time? How confident are you among judgement, shock and awe? What will be your mindset at rock bottom?

HSCT Ep 2-11 Bethany(2)

Having so many family members plagued with autoimmune disease, Bethany had just run out of options to treat her MS when her mom happened to watch an interview with Dr. Burt. With a ‘must do’ attitude, Bethany confronted HSCT and the public eye with brave resolve. Proclaiming it to be “literally the best thing that ever happened in my life,” you’ll likely be inspired to shed any fears about HSCT when you hear more of Bethany’s journey.

Tune in to hear more about the reciprocity of community, how Bethany continues to promote HSCT and coach others on their own journeys, as well as insights on why HSCT isn’t an option offered by more doctors.

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:
Other HSCT veterans
Facebook groups

#MS, #multiplesclerosis, #autoimmunedisease, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers, #advocacy, #selfadvocacy, #advocate, #selfcare, #rockbottom, #HSCTforMS, #HSCTWarriors, #HSCTWarriorsPodcast, #Podcast

Season 2, Ep. 10: Get to know Eileen’s positive mindset and learn more about the HSCT rollercoaster

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 Ep 2-10 Eileen

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

#MS, #multiplesclerosis, #autoimmunedisease, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers, #newnormal, #adjustment, #positivemindset, #positivity, #allgood, #advocacy, #selfadvocacy, #advocate, #HSCTforMS, #HSCTWarriors, #HSCTWarriorsPodcast, #Podcast, #DrBurt, #northwesternmemorial, #northwestern