『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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  • #87 Redefining Disability with Congenital Muscular Dystrophy
    2026/07/06
    In this episode of It Happened To Me, hosts Cathy Gildenhorn and Beth Glassman are joined by Kelly Berger and Avery Roberts, two women living with congenital muscular dystrophy and the co-hosts of the podcast Wheel Talk. Congenital muscular dystrophy, or CMD, is a rare group of genetic conditions that affect muscle strength and mobility from birth or early childhood. For Kelly and Avery, living with CMD has shaped their experiences with independence, accessibility, mobility, advocacy, and identity. But as they make clear in this conversation, disability is not something to be hidden, minimized, or “fixed.” It is part of who they are. Kelly and Avery share how they met, what life with CMD looks like for each of them, and how their relationship with disability identity has evolved over time. They also discuss what respectful support from others can look like, why unsolicited assumptions can be harmful, and how people can better understand wheelchair users as whole people living full, ordinary, meaningful lives. The conversation explores Kelly and Avery’s advocacy work, including their meetings with state and federal legislators around rare disease, disability rights, Medicaid, and 504 protections. They discuss the importance of bringing lived experience into policy conversations, as well as their role in helping spearhead the U.S. portion of the inaugural World Collagen 6 Awareness Day (June 6th). Collagen 6-related muscular dystrophy is the ultra-rare form of CMD that both Kelly and Avery live with, making awareness and community-building especially meaningful. Kelly and Avery also reflect on launching Wheel Talk podcast in 2025, why they felt a podcast was needed, and how they balance visibility with vulnerability when sharing their lives publicly. Through their platform, they are breaking down stereotypes, challenging misconceptions, and creating space for more honest conversations about disability, rare disease, and identity. Discussion Topics: What congenital muscular dystrophy is and how it affects muscle strength and mobilityKelly and Avery’s personal experiences living with CMDHow wheelchair users can be supported respectfullyCommon misconceptions about disability and mobility aidsWhy disability identity can be empoweringAdvocacy around rare disease, Medicaid, disability rights, and 504 protectionsThe importance of Collagen 6 Awareness DayBuilding community within the rare disease and disability spacesWhy Kelly and Avery launched their podcast Wheel TalkAdvice for children growing up with physical disabilitiesHopes for the future of CMD research, disability inclusion, and community advocacy About Kelly Berger and Avery Roberts Kelly Berger and Avery Roberts are two women living with congenital muscular dystrophy and the co-hosts of the podcast Wheel Talk. Through their advocacy, public speaking, media work, mentorship, and legislative engagement, they use their lived experiences to challenge stereotypes, advance disability rights, and build community for people living with rare disease and physical disabilities. Relevant Resources The Capitol Crawl in March 1990 Wheel Talk Podcast Website Wheel Talk Podcast’s Instagram Wheel Talk Podcast via Apple Wheel Talk Podcast via Spotify Avery’s Instagram Kelly’s Instagram World Col6 Myopathy Day MedlinePlus’ Collagen VI-related dystrophy 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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    45 分
  • #86 When Every Face Looks Unfamiliar: Inside the World of Faceblindness
    2026/06/15

    For most of her life, Sadie Dingfelder thought she was simply quirky: bad with directions, unusually clumsy, unable to recognize faces, and disconnected from many of her own memories. Then, a startling encounter in a grocery store led her to question whether her experiences reflected something deeper.

    In this episode of It Happened To Me, Cathy and Beth speak with Sadie about discovering that her brain processes faces, memories, images, and depth differently from most people’s. Her search for answers took her inside leading neuroscience laboratories, where she participated in brain-imaging studies and learned more about faceblindness, severely deficient autobiographical memory, stereoblindness, and aphantasia.

    Sadie shares what it is like to attend a party where everyone recognizes her, but she cannot identify anyone else, and how the fear of offending people can create anxiety in social and professional settings. She also explains the strategies she developed during her journalism career, from recognizing people through their voices and mannerisms to navigating conversations without revealing that she did not know who she was speaking with.

    The conversation also explores what it means to discover that other people can mentally replay scenes from their lives, visualize images in their minds, and perceive a level of three-dimensional depth that Sadie has never experienced. She reflects on the complicated mix of grief, relief, and self-understanding that accompanied these discoveries.

    Sadie’s story reminds us that there is no single “normal” way to perceive, remember, or experience the world, and that many cognitive and visual differences remain invisible to the people around us.

    In This Episode, We Discuss
    • The grocery store encounter that led Sadie to investigate how her brain works
    • The neurological difference between forgetting someone’s name and being unable to recognize their face
    • Navigating parties, professional events, and everyday interactions with faceblindness
    • The anxiety of unintentionally appearing rude or failing to recognize someone familiar
    • Severely Deficient Autobiographical Memory (SDAM) and the inability to mentally revisit personal experiences
    • The strategies Sadie used throughout her career as a journalist
    • How her cognitive differences affected childhood, independence, driving, and relationships
    • Stereoblindness and what it means to experience the visual world without typical 3D depth
    • Participating in neuroscience research and seeing differences in her brain through imaging
    • Aphantasia and how writing creatively without a visual imagination is possible
    • The freedom that can come from openly discussing an invisible disability
    • The grief and relief of finally understanding lifelong differences
    • What Sadie learned from vision therapy and attempts to develop 3D vision
    • Why cognitive and perceptual abilities may exist across a much broader spectrum than we realize
    About Sadie Dingfelder

    Sadie Dingfelder is a freelance science journalist whose writing has appeared in The New Yorker, National Geographic, and The Washington Post. She previously worked as a staff reporter for The Washington Post Express and as a senior science writer for the American Psychological Association’s Monitor on Psychology, where she covered neuroscience, cognitive science, and animal behavior.

    She is the author of Do I Know You?: A Faceblind Reporter’s Journey into the Science of Sight, Memory, and Imagination, which combines memoir, investigative journalism, and neuroscience to explore the many ways human beings experience the world differently.

    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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    42 分
  • #85 Brain Health Beyond Movement: Pain, Balance, and Neurological Recovery
    2026/06/01

    In this episode of It Happened To Me, we continue our conversation with Dr. David Traster, a clinical neurologist and educator who works with patients experiencing complex neurological conditions.

    In Part 1, Dr. Traster introduced clinical neurology, shared his personal experience with chronic illness and delayed diagnosis, and explained how neuroplasticity can help the brain adapt and recover. In Part 2, the conversation expands into how the nervous system affects far more than movement, including pain, digestion, heart rate, fatigue, balance, vision, and everyday functioning.

    Dr. Traster explains how different areas of the brain and nervous system influence the body, and why neurological symptoms do not always appear clearly on imaging or lab results. He discusses how patients can feel dismissed when their symptoms are real but difficult to measure, and offers practical insight into how people can advocate for themselves while seeking a diagnosis and appropriate care.

    Cathy and Dr. Traster also explore the connection between balance, vision, the inner ear, and spatial orientation. Using clear examples, Dr. Traster explains how the brain integrates information from the eyes, body, and vestibular system, and how dizziness, vertigo, motion sensitivity, or imbalance can occur when those systems are not communicating properly.

    The episode also looks at neurological recovery across the lifespan. Dr. Traster emphasizes that people are never “too old” or “too sick” to improve brain function, although each person’s recovery depends on their condition, limitations, and consistency. He explains the importance of repetition and targeted exercise in strengthening brain pathways, and why practice can help make functional improvements more lasting.

    This conversation closes with a hopeful look at the future of neurological recovery, including the role of technology, AI, advanced imaging, and new tools that may help us better understand and support the brain.

    In This Episode, We Discuss:
    • How the nervous system affects pain, digestion, heart rate, fatigue, and emotions
    • Why some neurological symptoms do not show up on MRIs, CT scans, or lab work
    • The challenges patients face when symptoms are dismissed or misunderstood
    • How to advocate for yourself when something feels wrong
    • Why diagnosis matters before treatment can be effective
    • How balance, vision, the inner ear, and body awareness work together
    • What can cause dizziness, vertigo, motion sensitivity, and imbalance
    • How people with vision loss or visual limitations can strengthen other systems
    • Why neurological recovery is possible at every age
    • How exercise, nutrition, social connection, and learning support brain health
    • The role of repetition and targeted exercises in retraining the nervous system
    • Common misconceptions about the brain’s ability to heal
    • Why technology may transform the future of neurological care
    About Dr. David Traster

    Dr. David Traster is a clinical neurologist and educator with nearly two decades of experience working with patients experiencing complex neurological conditions. His background as an athlete and personal trainer, along with his own experience navigating injury and chronic health challenges, shaped his approach to neurological recovery and rehabilitation.

    Dr. Traster has advanced training in concussion, dizziness and vertigo, movement disorders, autonomic nervous system conditions, and childhood developmental disorders. His work focuses on helping patients improve function through neurorehabilitation, targeted exercises, and individualized care.

    Listen to Part 1

    Listen to Part 1 of this conversation on Episode 85 of It Happened To Me to hear Dr. Traster explain clinical neurology, his own experience with delayed diagnosis and Lyme disease, concussion recovery, targeted brain rehabilitation, and neuroplasticity.

    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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    24 分
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