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HSCT Warriors

Zen Jen Stansbury Koenig

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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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show series
 
Warrior: Veena KinniAI: Multiple SclerosisHSCT: Cleveland Clinic, 2021Superpower: ability to know inner strengthHow 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 …
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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 …
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Warrior: Christian AI: Multiple SclerosisHSCT: 11/3/23 at the Tom Baker Cancer Center in CalgarySuperpower: body awarenessWhat 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…
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Warrior: Fiona MittenAI: Marburg’s variant of Multiple SclerosisHSCT: 12/29/2011Superpower: living in the momentAre 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 paralysi…
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Warrior: Ali StrongAI: Multiple SclerosisHSCT: November 2017Superpower: boundariesAre 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 str…
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Warrior: Matt LeFranceAI: Multiple SclerosisHSCT: June-July 2022Superpower: peace of mindHow 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 o…
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Warrior: MikeAI: Multiple SclerosisHSCT: January 17, 2022Superpower: acceptance and graceWhere does kindness hit you? To what extent do you seek grace? How well do you find acceptance? We first met Mike in Season 7, shortly after he found out about HSCT. After battling with insurance and seeking HSCT at different clinics in the United States, Mike …
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Warrior: Dr. Richard K. BurtAI: halterHSCT: pioneerSuperpowers: vast knowledge, being patient-centric, caring for improvement in quality of life, facilitating clarity through education, and fortitude in human spiritWith gratitude for the additional time to connect with Dr. Richard Burt and celebrate the recent publication of his latest book, Everyd…
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Warrior: Dr. Richard K. BurtAI: HalterHSCT: PioneerSuperpowers: tenacity, resilience, curiosity, compassion, holistic approachWith gratitude for time to connect with Dr. Richard K. Burt and celebrate the recent publication of his latest book, Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem ce…
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Warrior: Ali StrongAI: Multiple SclerosisHSCT: November, 2017Superpower: AcceptanceWhat do you do for yourself that brings you joy? Are you someone who accepts moderation? To what extent do you find balance in life?Check in with Ali Strong to recount her experience finding her way to and through HSCT and learn how she is feeling now at more than fi…
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Warrior: GracielaAI: Multiple SclerosisHSCT: January 2021Superpower: value for lifeAfter initially being told her symptoms were all in her head, Graciela received an apology from her neurologist along with her diagnosis. She was presented with options for treatment including disease modifying therapies and the extreme option of HSCT. When she furth…
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Warrior: Heidi PetersonAI: Relapsing Remitting MSHSCT: July, 2019Superpower: strengthDo you take the time to celebrate in life? How often do you recognize the little victories?Although Heidi was diagnosed relatively soon after her first experiences with early symptoms of multiple sclerosis, the doctor she saw focused more on prescribing medications…
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Warrior: Zarko BilalAI: Relapsing Remitting MSHSCT: April, 2021Superpower: positive thinkingWhen did you start to figure out the important things in life? How do you overcome fear of the unknown? How do you keep your mentality in tact?The continuation of this two-part episode reveals even more detail about Zarko’s experience with HSCT at the AA Max…
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Warrior: Zarko BilalAI: Relapsing Remitting MSHSCT: April, 2021Superpower: positive thinkingWhen did you start to figure out the important things in life? How do you overcome fear of the unknown? How do you keep your mentality in tact?After a happenstance diagnosis of MS, Zarko initially held on to the hope that his symptoms would be a one-time hit…
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Warrior: Yavor MilanovAI: Relapsing Remitting MSHSCT: Scheduled in March 2022Superpowers: ConsistencyHow well do you attune with culture? Is your mindset one of growth, or is it fixed? How do you navigate your internal compass?After his diagnosis, Yavor felt tired and run-down facing his experience as a new immigrant working three or four jobs at a…
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Warrior: Samantha LakeyAI: Primary Progressive Multiple SclerosisHSCT: July 5, 2021Superpower: eatingAre you someone who believes in fate? How do you recognize joy in yourself?Only after Samantha endured a full-body seizure and spent weeks in the hospital did she finally receive a diagnosis for symptoms that doctors continued to brush aside, even t…
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Warrior: Mike AI: Multiple SclerosisHSCT scheduled for January 2022Superpower: fortitudeHow do you share your diagnosis with others? How familiar are your loved ones with the demons you battle? How do you reconcile your experience with disease?Having received a diagnosis at the young age of 22 after a bout of optic neuritis, Mike experienced revers…
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Warrior: Jacob KinchAI Multiple SclerosisHSCT: October, 2020Superpower: new perspectiveWhere do you find glimmers of hope? Do you recognize the double-edged sword of multiple sclerosis? Jacob shares so many relatable aspects of his experience with multiple sclerosis, including frustration with doctors, questionable approaches and decisions around t…
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*This episode contains content that may be alarming to some listeners, including mentions of suicidal ideation. Please check the show notes for more detailed descriptions and take care of yourself*Warrior: Cassidy V. ChapmanAI: Multiple SclerosisHSCT: July15, 2019Superpower: Passion for bringing awareness to HSCTTo what extent are you an over-achie…
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Warrior: Rachel GalleryAI: Chronic Demyelinating Polyneuropathy DiseaseHSCT: Oct 19, 2020Superpower: EmpathyDo you consider yourself a lucky person? How often do you receive treatment for autoimmune disease? How layered is your circle of support?After spending nearly a year with strange symptom progression, a neurologist was finally able to diagnos…
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Warrior: Erin SchoenleinAI: Multiple SclerosisHSCT: March 15, 2020Superpower: energy to help other peopleHow wide is your view? Do you know what it feels like to be well? For how long have you been distanced? Having been diagnosed with an autoimmune disease in high school, Erin is no stranger to advocacy for well-being and the importance of spinnin…
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Warrior: DeWayne DurrAI: Multiple SclerosisHSCT: Oct 29, 2020Superpower: ConfidenceHow supported do you feel? To what extent do you think about each step that lies ahead? Continuing from where we left off in this two part episode, tune in to learn from DeWayne as he shares more about his experience navigating his return to work, changes with his di…
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Warrior: DeWayne DurrAI: Multiple SclerosisHSCT: Oct 29, 2020Superpower: ConfidenceAre you one to Check-in with DeWayne to hear more about his experience as the first patient to receive HSCT for Multiple Sclerosis at the Cleveland Clinic. With so many details about his experiences with the myeloablative protocol of the BEAT-MS study, including secu…
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Warrior: JocelineAI: Multiple SclerosisHSCT: soon in 2021?Superpowers: doing nothingHow comfortable are you with uncertainty? Are you able to leave the unknown alone? How do you find patience when you find yourself on the brink?Picking up where we left off in this two part episode, tune in to learn more about how Joceline reacted to the idea of inc…
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Warrior: JocelineAI: Multiple SclerosisHSCT: sometime in 2021?Superpowers: doing nothingHow do you establish trust in the systems? How many doctors have you fired? How do you find patience when you find yourself on the brink?After initially being brushed off by doctors, once diagnosed with multiple sclerosis, Joceline found she wasn’t interested in…
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Warrior: Amy CapelAI: Multiple SclerosisHSCT: October 2021Superpower: mentalityTo what extent are you distracted? Have you ever been on the outside looking in?We first met Amy in Season 7 when she described her struggle to understand the disease and the storm of negative side effects from the first medication she tried. Thanks to a friend who had s…
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Warrior: DeWayne DurrAI: Multiple SclerosisHSCT: October 20, 2020Superpowers: gratitudeDo you enjoy finding the why? How often do you extend gratitude?As the first person to receive HSCT as a part of the BEAT-MS trial at the Cleveland Clinic, DeWayne has graciously offered great insights throughout his journey, including this update at nearly two-y…
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Warrior: Allison CarrAI: Multiple SclerosisHSCT: December, 2014Superpowers: hope and grit Are you motivated to give back to others? To what extent do you recognize superpowers in others? How challenging is it for you to be optimistic?As someone who spent nearly twenty years battling the unknown, Allison was surprised to be approached by a stranger …
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Warrior: Alisha DalyAI: Multiple SclerosisHSCT: hopefulSuperpower: Resilience and compassionHow fair is the playing field in your experience with autoimmune disease? How far have you been strung along before receiving a diagnosis? Despite a severe bout of optic neuritis, it took more than four visits to the emergency room and multiple specialists w…
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Warrior: Rebecca KatonicaAI: Multiple SclerosisHSCT: November 2018Superpower: GraceDo you try to explain away that which might be serious? When was the last time you took a leap of faith?After an explosive headache behind her eyes, Rebecca found herself at the eye doctor who ordered an MRI that evidenced lesions and diagnosed her with multiple scle…
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Warrior: Cecilia ReyesAI: Multiple SclerosisHSCT: July, 2018Superpower: ResilienceTo what extent has your view softened? To what extent are you learning as you move through life? Do you find blessings and opportunities in the challenges you face?Check-in with Cecilia at four years post-transplant and learn from the many insights shared and be inspi…
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Warrior: Steve AppersonAI: Multiple SclerosisHSCT: April 9, 2015Superpower: compassion Is there anything you can’t do? How often do you find time for reflection? How often do you have space to go within?After initial symptoms that occurred years apart, when Steve found himself unable to run without foot drop after the same three miles, he consulted…
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Warrior: Elyse MeyerAI: Lupus and Sjogren’sHSCT: July 2020Superpower: not afraid to try new thingsAre you aware of being comfortable? How do you define success? How do you define quality of life?Despite maxing out every possible treatment option, including biologics and steroids, Elyse’s immune system was attacked by two different autoimmune condit…
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Warrior: Ali RobertsAI: Multiple SclerosisHSCT: November 6, 2017Superpower: MotivationAre you someone who feels your emotions? Do you focus on what can (v. can’t) be done? Can you find the present in each moment?The beginning of a new season offers the opportunity to check in with Ali and how she is faring, nearly five post-HSCT. Tune in to learn h…
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Warrior: Vic BonillaAI: Multiple SclerosisHSCT: Oct 2020Superpower: unbreakable resolveHave you ever felt like an observer of your life? Have you stared down the barrel of mortality? Is the patience you have with others, the same, greater, or less than the patience you have with yourself? Within a few months of being diagnosed with multiple scleros…
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Warrior: Chloe ZallenAI: Relapsing remitting multiple sclerosisHSCT: Oct/Nov 2020Superpowers: self-loveAre you able to recognize your limitations? Are you aware of your stressors?As a traveling cardiac specialist with experience at several hospitals, Chloe found herself in an extremely stressful environment with a lot of fear incited by the uncerta…
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Warrior: Christy Miller KuzienskyAI: MSHSCT: February 2021 in MonterreySuperpowers: patience and trust in Clinica RuizHave you been fortunate enough to find confidence in your big decisions? How has patience served you along your journey? Are you comfortable showing up with no expectations?With arm numbness that led to her diagnosis at the age of 2…
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Warrior: Ovi JamesAI: MSHSCT: February 2021Superpower: mindsetHow well do you navigate self-advocacy?After years of terrible headaches and issues with standing and walking, Ovi ended up losing her job and her home which caused significant relapses that rendered her disabled. As a single mother, Ovi’s goal was to focus on the positive and help her s…
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Warrior: Lynn RogersAI: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)HSCT Hopeful: Superpower: widened lensHave 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 r…
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Warrior: Sagira Ahmed NorrisAI: Multiple SclerosisHSCT: January 2020Superpower: flexibilityAre you someone who prefers to schedule a plan for every detail in life? Do you After first being diagnosed, Sagira found herself more driven than ever to complete life goals ahead of schedule while she was able, including travel to foreign countries to run m…
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Warrior: Brooke SlickAI: Multiple SclerosisHSCT: 2013Superpower: surrenderAre you able to surrender to all that seems out of your control? How easy is it for you to allow things to just happen?Revisit Brooke’s journey to HSCT and learn more about the setbacks she has faced post-HSCT, (including surgeries for trigeminal neuralgia) but also the influ…
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Warrior: Felicia MerrittAI: Progressive Multiple SclerosisHSCT: August 2020Superpower: Feeling invincibleHave you ever suddenly realized just how much you were taking for granted? Have you been able to find internal strength? What about internal peace? Shortly after turning 30, Felicia began experiencing vision issues and weakness. Following an int…
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Warrior: Marlo KalbAI: Relapsing Remitting Multiple SclerosisHSCT: confidence to fight backSuperpower: 9.30.19How will you face the many curves that lie ahead?Diagnosed at just 13 years old, Marlo found herself eager for HSCT after doing research and listening to this podcast. First interviewed as a HSCT Hopeful during Season 2, Marlo shared her jo…
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Warrior: Mendo MicevskiAI: Primary Progressive Multiple SclerosisHSCT: June 2021Superpower: MindsetAre you someone who prefers to live in the shadows? How well do you notice the ‘chalk and cheese’?After years of noticing odd symptoms that doctors could not figure out, Mendo was walking to dinner one Saturday evening when his vision became blurry an…
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Warrior: Stacy McNallAI: Primary Progressive Multiple SclerosisHSCT: May 14, 2019Superpower: being stillAre you someone that trusts the process? How do you handle the need to slow down? Are you able to find calm in the storm?As a very active person who “lived in overdrive” as a nurse practitioner and marathoner, Stacy tended to set aside the sympto…
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Warrior: Carolyn DemingAI: Multiple SclerosisHSCT: scheduled May 4Superpower: blatant honestyDo you ponder problems or possibilities? What is your approach to finding the right mindset? How do you advocate for what you know you need?After experiencing significant eye pain but no other symptoms, Carolyn was “utterly stunned” to be diagnosed with mul…
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Warrior: Charissa RiganoAI: Multiple SclerosisHSCT: December, 2020Superpower: self-confidenceIn our first tandem interview, meet HSCT Warrior Charissa and physical therapist, Dr. Gretchen Hawley, who have been collaborating throughout Charissa’s experience with multiple sclerosis. Dr. Hawley committed to specializing in multiple sclerosis and, in c…
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Warrior: JocelineAI: Multiple SclerosisHSCT: March 29, 2021Superpower: tenacityHow often do you reflect on all that is happening? Do you ever consider yourself from the inside-out? How do you find patience?Last week we reconnected with Joceline, who we first met in Season 6 while she anxiously awaited hearing about when she might be able to schedul…
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