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

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 wi...

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...

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...

In this episode of It Happened To Me, we explore clinical neurology, how the brain and nervous system function, what happens when things go wrong, and how recovery and adaptation are possible even after injury or chronic neurological challenges. Our guest is Dr. David Traster, a clinical neurologist and educator who has spent nearly two decades working with patients experiencing complex neurologic...

A sensitive content warning: this episode includes discussion of substance addiction, mental health struggles, suicide attempts, and recovery. If you or someone you know is in immediate danger or at risk of harm, call 911 or go to the nearest emergency room. The 988 Suicide & Crisis Lifeline is available 24/7 in the U.S., call or text 988 to connect with a trained counselor, or use the online...

Guest Ra-Jon James opens up about his medical emergency that turned his world upside down in an instant. Ra-Jon was diagnosed with Guillain-Barré Syndrome (GBS), a rare neurological condition where the body’s immune system attacks the nerves, leading to rapid muscle weakness and, in Ra-Jon's case, sudden paralysis. Ra-Jon first shared his courageous journey on WTKR news in his hometown, and in thi...

We welcome back Meredith Mangold to shift the conversation from the medical "odyssey" to the human connection. While the first part of Meredith’s story ( Episode 76 ) focused on her grueling search for a diagnosis and treatment for ulcerative colitis, POTS, and EDS, in this episode, we explore the essential, and often overlooked, role of support systems. Living with chronic pain at an "8 out of 10...

In this episode we explore the complex world of autism spectrum disorder (ASD) in children, featuring practical guidance from Dr. Teresa Lyons, an autism expert, scientist, and parent of a child with autism.    Dr. Theresa Lyons is an international autism educator, Ivy League-trained scientist, and autism parent. Dr. Lyons holds a Ph. D. from Yale and is the founder and CEO of Navigating AWEtism,...

Discover how acupuncture, traditionally rooted in Chinese medicine, is transforming fertility care today. Join us as Kirsten Karshmer, a pioneer with over 20 years of experience, shares insights into how integrative practices and AI technology are making fertility treatment more accessible, personalized, and effective.   In This Episode: The science and philosophy behind reproductive acupuncture H...

In this episode of It Happened To Me, we share a story that underscores how quickly life can change, even when everything seems perfectly healthy.   Our guest, Kathi Lopez, was a retired business owner who felt active, well, and thriving when she suddenly lost vision in one eye. What began as a frightening visual disturbance quickly escalated into a medical emergency and led to a diagnosis of Gian...

In this episode of It Happened To Me, we share a powerful story of resilience, creativity, and determination in the face of serious health challenges. We’re honored to welcome Carolyn Routh, an award-winning musician, entrepreneur, and front-woman of the acclaimed bluegrass band Nu-Blu. With more than two decades on the road, multiple Billboard Top Ten albums, and appearances on platforms like CBS...

In this deeply moving episode we explore the reality of chronic pain, the kind that reshapes identity, erodes independence, and too often leaves patients feeling invisible within the healthcare system. Joining us is Meredith Mangold , an inflammatory bowel disease and chronic pain patient advocate whose medical journey began in college and evolved into years of relentless, life-altering pain. Mere...

Happy New Year listeners! We hope you enjoyed the holidays and are off to a wonderful start of 2026!    The last episode we released featured our Executive Producer Kira Dineen putting on her genetic counseling hat to explore how genetic counselors can help those in the rare disease community. With how much you all enjoyed that “blast from the past” episode, we thought we would bring you one more...

Happy holidays listeners! With the year coming to an end, Cathy Gildenhorn, Beth Glassman, and our Executive Producer Kira Dineen have been reflecting back on a full three years of “It Happened To Me”. We’ve produced nearly 75 episodes and learned so much along the way. A good chunk of them have been exploring rare diseases and hearing people’s journeys from early symptoms, to diagnosis, to treatm...

In this uplifting episode, hosts Beth Glassman and Cathy Gildenhorn sit down with Leanna Scaglione, a powerhouse rare disease advocate and marathon runner living with NF2-Related Schwannomatosis (NF2-SWN), formerly known as neurofibromatosis type 2. Diagnosed at just 16 years old, Leanna’s life changed dramatically when tumors were discovered in her nervous system, a hallmark of NF2-SWN. Many woul...

We’re re-releasing one of our most popular episodes, an important conversation with Wolfram syndrome expert Dr. Fumi Urano.   We’re bringing this episode back in honor of Diabetic Eye Disease Month, and because it’s the perfect follow-up to our last episode featuring Dr. Rachel Hyman and our very own co-host Cathy Gildenhorn as guests. Their experiences with the milder, adult-onset variant of Wolf...

In this insightful episode of It Happened To Me, hosts Beth Glassman and Cathy Gildenhorn (in a rare guest role!) sit down with Dr. Rachel Hyman, a clinical psychologist from Seattle whose experience with Wolfram syndrome was recently featured in The Washington Post here . Wolfram syndrome is a rare genetic disorder that affects vision, blood sugar regulation, and neurological function. Often diag...

In this heartfelt episode of It Happened To Me, hosts Cathy Gildenhorn and Beth Glassman sit down with Nikki McIntosh, a rare disease advocate, writer, and mother whose life changed when her son Miles was diagnosed with Spinal Muscular Atrophy (SMA). Nikki McIntosh is the founder of Rare Mamas®, a resource, and community dedicated to supporting and empowering mothers of children with rare diseases...

Kenny Kasnett, a seasoned executive and entrepreneur whose life took an unexpected turn with a diagnosis of interstitial lung disease (ILD) joins the podcast for a powerful episode. What began as a persistent cough during a round of golf soon unraveled into a life-threatening condition that would ultimately require a lung transplant. Kenny opens up about the diagnostic journey, the emotional toll...

In this episode of It Happened To Me, we share a story of love, loss, and advocacy in the rare disease community. We are joined by Jordan Kruse, whose son, Pruitt, was born with ornithine transcarbamylase (OTC) deficiency, and Dr. Susan Berry, a geneticist at M Health Fairview and professor at the University of Minnesota Medical School, who specializes in rare metabolic disorders like OTC deficien...

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 cu...

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...

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 spotl...

In this second part of our interview with Sartia Edwards, we continue a conversation about her son Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.   Sarita Edwards, MHA is the CEO & President at the E.WE Foundation , a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases. Sarita's son Elijah was diagnosed...

In this powerful episode of It Happened To Me, co-hosts Cathy and Beth sit down with Sarita Edwards, an award-winning advocate, rare disease leader, and mother to Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.   Sarita Edwards, MHA is the CEO & President at the E.WE Foundation , a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Synd...