223 episodes

Illuminating the invisibilities of autoimmune disease.

Designed to bring voice to HSCT journeys – highlight the snowflakes (individual experiences) and recognize our superpowers – because we are as unique in our HSCT journey as we are in our experience with autoimmune disease.

HSCT Warriors Zen Jen Stansbury Koenig

    • Health & Fitness
    • 4.6 • 24 Ratings

Illuminating the invisibilities of autoimmune disease.

Designed to bring voice to HSCT journeys – highlight the snowflakes (individual experiences) and recognize our superpowers – because we are as unique in our HSCT journey as we are in our experience with autoimmune disease.

    Connect with Veena and learn how she embodied a positive mindset through HSCT (Ep. 104)

    Connect with Veena and learn how she embodied a positive mindset through HSCT (Ep. 104)

    Warrior: Veena Kinni
    AI: Multiple Sclerosis
    HSCT: Cleveland Clinic, 2021
    Superpower: ability to know inner strength

    How fully do you embrace opportunities to enjoy life? How do you promote a positive mindset?

    As a trained physician, it was hard for Veena as she transitioned to being a patient after she was diagnosed with multiple sclerosis in December of 2011. She began on a disease-modifying therapy that she paused in order to get pregnant, though soon after delivering her daughter, her symptoms flared. Between 2014 and 2020, Veena’s condition continued to deteriorate until 2020 when she visited a neurologist at the Cleveland Clinic who suggested HSCT and embraced the opportunity with an ‘ignorance is bliss’ mindset.

    While she believes that it halted the progression of her disease, and shows no active lesions on MRI, the procedure and recovery have been challenging for Veena, which she attributes to being in the secondary progressive phase of disease. Tune in to learn more about Veena’s experience, her transition to JC+ during treatment with disease modifying therapy, and why she agrees that pursuing HSCT sooner in the course of the experience with autoimmune disease to avoid lasting damage. 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 information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us 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:
    Center for Regnerative Biotherapeutics
    Vinna Kinni, MD Multiple Sclerosis Defeater (blog)

    • 44 min
    Meet Janet and learn more about how she eliminated stress along her path to HSCT (Ep. 103)

    Meet Janet and learn more about how she eliminated stress along her path to HSCT (Ep. 103)

    To what extent are you able to eliminate stress from your life? Do you believe you can achieve whatever you put your mind to? To what extent are you aware of treatment options?

    Despite noticing some symptoms that interfered with walking and mobility, Janet postponed seeing doctors until after she retired from being a police officer. While Janet did not find her career to be stressful, she did experience intense stress in her relationships and personal life. Once Janet came down with bouts of hives caused by intense, long-sustained stress, she began taking steps to reduce and eliminate stress from her life. Over time, Janet experienced other stressors and symptoms (like foot drop and optic neuritis) that she was able to explain away at the time they occurred, but upon reflection, realized they were all related to her eventual diagnosis of multiple sclerosis in March of 2020.

    Tune in to learn more about how Janet explored options for HSCT in the US and Mexico, prepared her body physically for HSCT, developed strong feelings about accessibility to HSCT, found motivation to write a book about her experience and help others, and ended up having a complete reversal of symptoms. 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 information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us 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.

    • 1 hr 49 min
    Connect with Christian to learn more about his mindful approach to HSCT in Calgary (Ep. 102)

    Connect with Christian to learn more about his mindful approach to HSCT in Calgary (Ep. 102)

    Warrior: Christian
    AI: Multiple Sclerosis
    HSCT: 11/3/23 at the Tom Baker Cancer Center in Calgary
    Superpower: body awareness

    What is your capacity for listening to your body? How well do you fare through complications? How comfortable are you with looking inward?

    After the numbness and tingling in his legs restricted his capacity to walk in the course of just a few weeks, Christian was quickly diagnosed after finding the right doctor who knew what his symptoms were indicating. After cycling through a variety of disease-modifying therapies over the course of seven years, Christian continued relapsing. After the humbling and terrifying experience of being wheelchair-bound for a few months in December of 2022, Christian switched DMTs again and after it didn’t stop new lesions, he was eventually referred for HSCT in Calgary in June of 2023.

    Tune in to learn more about the circumstances that led Christian to pursue HSCT in Calgary, and how he fared through the myeloablative protocol, including complications and resolutions. 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 information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us 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.

    • 1 hr
    Connect with Fiona to learn more about perseverance and Marburg’s variant of MS (Ep. 101)

    Connect with Fiona to learn more about perseverance and Marburg’s variant of MS (Ep. 101)

    Warrior: Fiona Mitten
    AI: Marburg’s variant of Multiple Sclerosis
    HSCT: 12/29/2011
    Superpower: living in the moment

    Are you someone who believes that everything happens for a reason? How many moments do you treasure each day?

    Diagnosed 18 years ago after being hit by a drunk driver, several symptoms of multiple sclerosis like optic neuritis and paralysis onset and progressed so quickly, it seems Fiona’s experience was extra unique from the start. From bouts of total paralysis that kept her hospitalized for months at a time, to relief from rounds of chemotherapy that had her walking again, to severe withdrawal that led to chemo-induced psychosis, by the time Fiona found her way to HSCT, she was struggling to walk (a requirement to pass the testing in order to qualify for HSCT).

    Tune in to learn how Fiona became the third person to be transplanted outside of the trials in Calgary, how she fared with HSCT and recovery, and how she is doing twelve-plus years 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 information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us 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.

    • 1 hr 18 min
    Check-in with Ali at more than six years post-HSCT as we launch our eleventh season (Ep. 100)

    Check-in with Ali at more than six years post-HSCT as we launch our eleventh season (Ep. 100)

    Warrior: Ali Strong
    AI: Multiple Sclerosis
    HSCT: November 2017
    Superpower: boundaries

    Are you someone who feels your emotions? Are you one to choose happiness? Do you find the present in every moment?

    The beginning of a new season offers the opportunity to check in with Ali and how she is faring, more than six years post-HSCT. Tune in to revisit the struggles with active multiple sclerosis, hear how HSCT has shifted her symptoms and experience with MS, and learn how Ali is focusing her energy these days.

    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 to Jacob Kinch for engineering the audio to make this podcast possible. You can find us 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.

    • 1 hr 7 min
    Meet Matt and be inspired to find peace of mind (Ep. 99)

    Meet Matt and be inspired to find peace of mind (Ep. 99)

    Warrior: Matt LeFrance
    AI: Multiple Sclerosis
    HSCT: June-July 2022
    Superpower: peace of mind

    How do you know what to expect? From whom do you seek feedback? How do you decide to take the next step?

    Diagnosed just after college at the young age of 25 when he experienced double vision and a variety of doctors had a hard time understanding what was going on, Matt was diagnosed after a MRI revealed a lesion on his brain stem. As he pondered what was next, despite feeling as though life was ending when it should be only just beginning, Matt spent time researching his options for treatment before aging out of insurance coverage.

    Tune in to learn more about Matt’s research efforts, his natural approach to managing MS for thirteen years before HSCT, and how he fared during his time in Puebla at Clinica Ruiz. 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:
    Best Bet Diet and MS Hope

    • 46 min

Customer Reviews

4.6 out of 5
24 Ratings

24 Ratings

jelabelle ,

Thank you!!

Thank you, Jen, for everything you do to connect the AI community and help us better understand our diseases through our stories. Inspirational podcast!!!

Addy May McGovern ,

AMAZING podcast

I don’t actually have an autoimmune disease, but this podcast is inspirational nonetheless. Thank you, Jen, for your zenness and overall amazing podcast.

Dr. Conda ,

HSCT Warriors Review

I was recently diagnosed with MS and am learning as much as I can. I love the honesty of the participants and feel it helps me understand my options.

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