HSCT Warriors

By: Zen Jen Stansbury Koenig
  • Summary

  • 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.
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Episodes
  • Connect with Veena and learn how she embodied a positive mindset through HSCT (Ep. 104)
    Jul 24 2024
    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)
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    44 mins
  • Meet Janet and learn more about how she eliminated stress along her path to HSCT (Ep. 103)
    Jul 12 2024
    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.
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    1 hr and 49 mins
  • Connect with Christian to learn more about his mindful approach to HSCT in Calgary (Ep. 102)
    Mar 20 2024
    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.
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    1 hr

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