『It Happened To Me: A Rare Disease and Medical Challenges Podcast』のカバーアート

It Happened To Me: A Rare Disease and Medical Challenges Podcast

It Happened To Me: A Rare Disease and Medical Challenges Podcast

著者: Cathy Gildenhorn Beth Glassman and Kira Dineen (DNA Today)
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The mission of our podcast is to support you, our listeners and to create community, as you confront the toughest challenges in life. All of us will experience health hardships. The real question is how we adapt. That is the focus of It Happened To Me, which wants to help you overcome limitations and live a full and satisfying life. Drawing on their own health challenges, hosts Cathy Gildenhorn and Beth Glassman interview guests who share stories and research to help you succeed in the face of difficult health obstacles. It happened to me…I’m not alone and neither are you. We encourage you to learn more at ItHappenedToMePod.com. Please use the contact form on our website to submit your guest suggestions, comments, questions, ideas, and feedback for the show, you can also email us directly at ItHappenedToMePod@gmail.com. It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our ...All rights reserved to the team: Cathy Gildenhorn, Beth Glassman, & Kira Dineen (DNA Today) 科学
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  • #67 Exploring Clinical Trials in Latin America with Julio G. Martinez-Clark
    2025/09/01

    Join us as we delve into the evolving landscape of clinical trials in Latin America with Julio G. Martinez-Clark, CEO of BioAccess. Discover how his company is pioneering pathways for medtech innovators and shaping the future of medical device innovation in emerging markets.

    Bioaccess® is a trailblazing company that’s helped over 100 Medtech innovators navigate global clinical trials, and he currently serves as Ambassador of International Accrediting Organization for Clinical Research in the Americas. With a career that spans healthcare infrastructure, telecommunications, and regulatory strategy, Julio is a leading voice in the field of medical device innovation in emerging markets.

    From his early days at Johns Hopkins Hospital to his current role in shaping ethical and efficient trial systems across Latin America, Julio’s mission is clear: to expand access to high-quality research for patients and sponsors alike. He’s also the host of the Global Trial Accelerators™ podcast, where he dives into trends in Medtech, Biopharma, Radiopharma and clinical trial innovation.

    We unpack what makes Latin America a strategic region for clinical trials, especially for rare diseases, and explore how improving trial access can speed innovation, and change lives.

    Episode Discussion Topics:

    • Introduction to Julio G. Martinez-Clark and his role at BioAccess.
    • The clinical trial landscape in Latin America and its strategic importance.
    • Julio's career journey from Johns Hopkins Hospital to BioAccess.
    • The impact of cultural competence and community engagement on clinical trials.
    • Challenges and solutions for conducting clinical trials during the pandemic.
    • The role of artificial intelligence and digital tools in clinical trials.
    • The future of clinical research in Latin America, including radiopharmaceuticals and theranostics.
    • The importance of international standards and certifications for clinical research sites.
    • Success stories and innovative approaches in clinical trials.
    • Julio's podcast, Global Trial Innovators, and its focus on industry education.

    During the episode a blog post on bioaccess’ website was referenced that highlights academic papers that talk about the higher recruitment and retention rates in Latin America, here it is: https://www.bioaccessla.com/blog/the-latin-american-advantage-why-clinical-trial-recruitment-and-retention-outpace-the-us-and-europe

    Connect With Us:

    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.

    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

    See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

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    1 時間 1 分
  • #66 Not Just Fatigue: Global Advocating for ME/CFS from Bed
    2025/08/18

    In this deeply moving episode of It Happened To Me, we sit down with Elizabeth Ansell, founder of #NotJustFatigue, a nonprofit initiative dedicated to raising awareness about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This is a condition that is vastly under diagnosed, possibly 90% which would mean it may affect up to 9 million people.

    Elizabeth’s life changed dramatically as a young adult when she developed ME/CFS—a complex, debilitating condition often triggered by infection. Since 2016, she has been bed-bound, living with severe fatigue, cognitive impairment, and post-exertional malaise. Yet, from her bed, she has become a powerful voice for change.

    Through #NotJustFatigue, Elizabeth educates both the public and medical professionals about this misunderstood illness, challenging harmful myths and confronting the stigma that patients face. In this episode, she opens up about her own diagnostic odyssey, the emotional and physical toll of the disease, and the resilience it takes to advocate while living with severe limitations.

    What You’ll Learn in This Episode:

    • Elizabeth’s journey to an ME/CFS diagnosis and how it changed her life
    • The reality of living bed-bound for nearly a decade
    • Why post-exertional malaise is a hallmark—and often misunderstood—symptom
    • How #NotJustFatigue is changing public perception and medical understanding
    • The connection between ME/CFS and Long COVID
    • Strategies for supporting someone living with ME/CFS
    • The role of storytelling in advocacy and awareness
    • Myths and misconceptions that harm patients
    • The emotional toll of medical gaslighting
    • Hopes for the future of ME/CFS research and treatment

    More About Our Guest:

    Elizabeth Ansell, founder of #NotJustFatigue, is an advocate, storyteller, and changemaker for the ME/CFS community. A graduate of the University of Pennsylvania, she has a background in literature and TV production. Bed-bound since 2016, Elizabeth uses her lived experience and creative skills to educate others about ME/CFS, dismantle stigma, and build community for those navigating the same invisible illness.

    Here is the visual historical timeline that Elizabeth mentioned during the episode. She also recommends watching #NotJustFatigue’s 15 minute short film about the condition.

    An update since we recorded with Elizabeth….

    In a rare bipartisan move earlier this month (August 2025), the Senate Labor-HHS FY26 Appropriations Report delivered two major wins for the chronic illness community:

    • Formally recognized ME/CFS within the RECOVER Initiative for Long COVID
    • Directed NIH to implement the ME/CFS Research Roadmap within 180 days

    This is a long-awaited breakthrough for millions of Americans with ME/CFS, a post-viral disease that has no FDA-approved treatment and receives just $13M in funding annually, despite being more common than Multiple Sclerosis. Advocates are calling this a major step forward in pushing NIH toward accountability and treatments.

    Connect With Us:

    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.

    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

    See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

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    51 分
  • #65 Invisible Swells: Surviving with Hereditary Angioedema Type III
    2025/08/04

    In this episode of It Happened To Me, we sit down with the multi-talented Sally Pirie, a comic artist, painter, professor, toymaker, and rare disease advocate, to explore her journey living with Hereditary Angioedema Type III (HAE-3). Sally’s path to diagnosis was long, painful, and emotionally fraught, culminating in a deeply moving feature in The New York Times that helped shine a national spotlight on HAE and the broader diagnostic odyssey that so many rare disease patients face.

    Sally opens up about the unpredictable flares of HAE, the mental toll of being misunderstood by the medical system, and how she channels her experiences into art, humor, and education.

    She is also Professor of Child and Family Studies and Director and Master Artist at the Comics-Based Research Lab at the University of Massachusetts, Amherst. An award-winning newspaper cartoonist and an anthropologist of childhood and infancy, she received her PhD from the University of Colorado, Boulder and is a graduate of Punahou School and Grinnell College. Her areas of expertise include comics-based research methods, ethnographic research and transgender childhoods. She was the 2020 Distinguished Visiting Professor of Liberal Arts at the University of Minnesota, Morris and the 2021 recipient of the Grinnell College Alumni Award in recognition of her lifetime of public service. She once went to New Year’s Eve fireworks dressed as a huge blue pufferfish because why not. Life should be suffused with art and joy.

    Topics We Cover:

    • What is Hereditary Angioedema Type III, and how is it different from other forms?
    • Sally’s early symptoms, misdiagnoses, and emotional health during the diagnostic odyssey
    • Her daughter’s experience with HAE while taking gender-affirming estrogen and being the only documented transgender person with the condition
    • The significance of her New York Times feature
    • What it feels like to experience an HAE attack and how deadly it can be
    • Navigating academia and advocacy while managing a chronic illness
    • How comics and illustration became a therapeutic and educational tool
    • Invisible illness misconceptions and systemic barriers in rare disease care
    • The importance of laughter, joy, and resilience in the face of adversity
    • Advice for undiagnosed patients and caregivers supporting loved ones with rare conditions

    You can learn more about Sally on her website. She also highly recommends the Hereditary Angioedema Association for resources. And be sure to read her feature in the New York Times here.

    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.

    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

    See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

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    51 分
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