On One Condition

Sylvain Berthelot
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  • 의학
  • 격주 업데이트

On One Condition is a podcast for anyone who wants to learn about a specific health condition. Hear from people who live with a condition, how it affects them and how they manage it. Sylvain Berthelot has worked in the clinical trial industry for over a decade. He is naturally curious and passionate about how the body functions. Through his interviews, he aims to give fellow human beings a voice, spreading the word about the multitude of medical conditions that affect us.

  1. Episode 80: Roberta Smith - Alagille Syndrome

    2월 11일

    Episode 80: Roberta Smith - Alagille Syndrome

    Sylvain speaks with Roberta about living alongside Alagille syndrome through her daughter Chloe’s journey. Roberta shares what it means to parent a child with a rare, multi-system condition, from the shock of an early diagnosis, to years dominated by relentless itching, sleep deprivation, and the emotional weight of watching her child suffer. The conversation explores not only the medical realities of Alagille syndrome, but also the invisible burdens placed on caregivers, particularly when support systems fall short. Roberta reflects on the life-changing impact of clinical trials, the complexities of liver transplantation, and the long road toward independence for a young adult living with a chronic illness. Throughout, there is a quiet but powerful thread of hope, grounded in medical progress, community, and the small, human moments that sustain families through unimaginable challenges. The song Roberta chose is Here Comes The Sun by the Beatles.

    38분
  2. Episode 79: Brandon Hudgins - GPA

    1월 28일

    Episode 79: Brandon Hudgins - GPA

    Brandon shares a deeply personal and grounded account of living with granulomatosis with polyangiitis (GPA), a rare and potentially life-threatening autoimmune vasculitis. Brandon walks us through his diagnosis as a young Division I athlete, the long road to remission, and the physical and emotional toll of repeated relapses, impacting his lungs, kidneys, and identity as a runner. Beyond the medical realities, this conversation gently explores grief, mental health, and the quiet isolation that often accompanies rare disease, especially in a sport environment when there is a pressure – external or self-inflicted – to “push through”.  Brandon reflects on learning to listen to his body, manage stress, and redefine success away from constant striving. The episode also highlights the power of community, advocacy, and shared stories through Brandon’s work with the Vasculitis Foundation, a reminder that inspiration doesn’t always come from extraordinary achievements; sometimes it comes from showing up, telling the truth, and helping others feel less alone. The song that Brandon chose is Father’s Son by Steven Wilson Jr.

    39분
  3. Episode 78: Gay Grossman - ADCY5

    1월 7일

    Episode 78: Gay Grossman - ADCY5

    Sylvain speaks with Gay Grossman about life with ADCY5, a rare genetic movement disorder, and the journey she and her daughter Lilly have travelled together. Gay shares the long and often lonely road to diagnosis, the physical realities of a condition that affects the body but not the mind, and the quiet resilience Lilly has shown since childhood. The conversation moves through years of misdiagnosis, advocacy in schools, sleepless nights, and relentless problem-solving, before arriving at a moment of transformation: a treatment discovered through community, research, and lived experience that has profoundly changed Lilly’s quality of life. Above all, this episode is a story about perseverance, parental advocacy, and the belief that understanding the root cause can change everything, not just for one family, but for many. The piece of music that Gay chose is Canon by Johann Pachelbel.

    33분
  4. Episode 77: Marguerite Hughes - PWS

    2025. 12. 17.

    Episode 77: Marguerite Hughes - PWS

    Marguerite shares the story of her son Louis and their life with Prader-Willi syndrome (PWS), a complex rare disease. Marguerite speaks with honesty, warmth and clarity about the medical, emotional and practical realities of raising a child with a rare genetic condition, from Louis’s fragile start in neonatal intensive care to adulthood in a specialist supported living environment. She explores complex themes such as food security, anxiety, autism, and the invisible labour of caregiving, while challenging societal assumptions about success, independence and what a “good life” looks like. Marguerite is a strong advocate for the PWS community, and the importance of social care for children and families dealing with a rare condition. This episode is ultimately a powerful reminder that with understanding, routine, community and the right support, people with Prader-Willi syndrome can live happy, meaningful lives – and that listening to those with lived experience is essential. The song that Louis chose is Say Something by Justin Timberlake featuring Chris Stapleton.

    30분
  5. Episode 76: Angela Papazoglou - IRF2BPL

    2025. 11. 19.

    Episode 76: Angela Papazoglou - IRF2BPL

    This is the story of Yiannis, nicknamed “Mr. Sunshine”, told by his mother Angela. Yiannis is a 5-year-old boy who lives with the ultra-rare IRF2BPL-related disorder, which has affected his development in many ways. Angela describes the profound ways in which this condition has reshaped their lives, and how hope is their drive to make a difference for Yiannis and other children affected by IRF2BPL. Angela’s story is one of fierce advocacy and unconditional love. After Yiannis’ diagnosis, she and her husband founded Yellow for Yiannis, a foundation devoted to advancing research into the condition and supporting other families facing similar diagnoses. Angela balances the day-to-day joy of raising her son, with her fight to be heard by the scientific community to find a suitable treatment for Yannis. Music, especially “Here Comes the Sun” by The Beatles, plays a central role in their lives. Angela naturally selected this song for this episode.

    46분
  6. Episode 75: Kayleigh Berkoski - Addison's Disease

    2025. 11. 05.

    Episode 75: Kayleigh Berkoski - Addison's Disease

    Kayleigh opens up about living with Addison’s disease, a rare condition where the adrenal glands fail to produce enough cortisol. Diagnosed at just 15, Kayleigh describes the medical journey that led to her diagnosis, the daily routines that keep her well, and the emotional resilience she’s built along the way. Despite the challenges of balancing chronic illness with study and performance dreams in musical theatre, she radiates optimism and determination. Kayleigh’s story is one of strength, self-awareness, and adaptability – from planning university choices around nearby endocrinology hospitals to managing stress and illness triggers with remarkable maturity. Her openness about wanting more chronic illness representation in theatre is inspiring, as she reminds listeners of the importance of visibility and empathy. The song that Kayleigh chose is The Chain by Fleetwood Mac.

    30분
  7. Episode 74: Erika Stariha - SATB2-associated Syndrome

    2025. 10. 22.

    Episode 74: Erika Stariha - SATB2-associated Syndrome

    Erika shares her family’s seven-year journey to find a diagnosis for her son, Urban, who was eventually found to have SATB2-associated syndrome. With warmth and candour, Erika explains what it’s like to live through years of uncertainty, to celebrate small milestones, and to help build a global community. Erika reflects on motherhood, advocacy, and balance – from the early fears of losing her child to the hope and purpose she found through founding the SATB2 Europe Foundation. Her story is one of resilience, love, and an unshakable belief in community and connection. The song that Erika chose is Ain't No Mountain High Enough by Marvin Gaye and Tammi Terrell.

    40분
  8. Episode 73: Carolyn McNamara - Acromegaly

    2025. 10. 08.

    Episode 73: Carolyn McNamara - Acromegaly

    Acromegaly is a rare condition caused by a pituitary tumour that leads to excess growth hormone. In this episode, Carolyn shares candidly how her symptoms, which developed slowly and over a long period of time, were mistaken for menopause or normal aging, until a series of unusual infections led to her diagnosis. She reflects on the shock of being told she had a brain tumour, the challenges of undergoing major surgery, and the ongoing reality of living with residual tumour and long-term treatment. We also talk about the importance of listening to your body, and the progressive journey to recovery and feeling your own self again. Carolyn’s story is one of resilience and hope: she has run marathons, completed triathlons, and learned to manage her energy carefully while still embracing life fully. The song that Carolyn chose is Unwritten by Natasha Bedingfield.

    30분
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소개

On One Condition is a podcast for anyone who wants to learn about a specific health condition. Hear from people who live with a condition, how it affects them and how they manage it. Sylvain Berthelot has worked in the clinical trial industry for over a decade. He is naturally curious and passionate about how the body functions. Through his interviews, he aims to give fellow human beings a voice, spreading the word about the multitude of medical conditions that affect us.

정보

  • 제작진
    Sylvain Berthelot
  • 방송 연도
    2023년 - 2026년
  • 에피소드
    80
  • 등급
    전체 연령 사용가
  • 웹사이트 보기
    On One Condition