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

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

Cathy Gildenhorn, Beth Glassman, and Kira Dineen (DNA Today)
Wolfram Syndrome
Trisomy 18
Autism
Rare Diseases
Neuroplasticity
Guillain-Barré Syndrome
Chronic Pain
Ornithine Transcarbamylase Deficiency
Concussions
Diabetes
Genetic Counseling
NF2
Brain Health
Latin America
Hereditary Angioedema
Interstitial Lung Disease
Lung Transplant
Me-Cfs
Vision Through Music
Washington, United States

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 an... more

PublishesTwice monthlyEpisodes87Founded3 years ago
Number of ListenersCategory
Science

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

Latest Episodes

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... more

YouTube

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... more

YouTube

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... more

YouTube

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 emerge... more

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Recent Guests

David Traster
Clinical neurologist and educator focused on neuro-rehabilitation
Independent physician; specializes in concussion, dizziness, vertigo, movement disorders, autonomic disorders
Episode: #85 Brain Health Beyond Movement: Pain, Balance, and Neurological Recovery
Drew Motiv
Motivational speaker and founder of the Divine Family Movement
Divine Family Movement
Episode: #83 Surviving Addiction and Suicide Attempts: Drew Motiv’s Journey to Recovery
Ra-Jon James
Guillain-Barré syndrome survivor and speaker
Episode: #82 Paralyzed Overnight: Relearning to Walk After Guillain-Barré Syndrome
Theresa Lyons
International Autism Expert, Ivy League-trained scientist and autism parent
Navigation Autism
Episode: #80 The Expert's Guide to Autism: Diagnosis, Red Flags, and Evidence-Based Care
Kirsten Karshmer
Health tech pioneer and reproductive acupuncturist
Conceivable Technologies
Episode: #79 How Acupuncture Can Support Fertility
Carolyn Routh
Award-winning musician, entrepreneur, front woman of Nu-Blu
Nu-Blu
Episode: #77 When Chronic Illness Changes the Tune: A Musician’s Journey Through Diabetes and Stroke
Meredith Mangold
Inflammatory bowel disease and chronic pain patient advocate
Self-identified advocate
Episode: #76 When Pain Never Stops: A Survivor’s Story of Chronic Pain and Hope
Amy Patterson
Genetic counselor
Johns Hopkins Department of Genetic Medicine
Episode: #75 Genetic Testing for Rare Diseases with Amy Patterson
Kira Dineen
Master's in genetics; licensed prenatal genetic counselor; host of DNA Today
DNA Today
Episode: #74 Genetic Counseling for Rare Diseases with Kira Dineen [Re-Release]

Hosts

Cathy Gildenhorn
Host of the show; co-host of It Happened To Me; involved in production
Beth Glassman
Co-host of the show; host on It Happened To Me
Kira Dineen
Executive Producer and Marketing Lead

Reviews

4.8 out of 5 stars from 47 ratings
  • I really really love the concept of this podcastd, but the host's style of hosting it, ugh.

    I love learning about interesting rare diseases and what life is like for people who have to live with them. The podcast about rare disease awareness that I was addicted to had discontinued, so I was so excited when I found this one and saw that it was still running. Then life got distracting and this podcast ended up sitting in my library for who knows how long. a time finally came to listen to episode 82, the episode about Guillain-Barre syndrome. I pressed Play and... Yikes. When the host was... more

    Apple Podcasts
    1
    Tia Lorraine
    United States2 months ago
  • Everyone should listen!

    Cathy and Beth are thoughtful, empathetic hosts who help shine a much-needed light on rare diseases. Most importantly, they emphasize how to live your best life despite these health challenges.

    Apple Podcasts
    5
    Favoritestepchild
    United States7 months ago
  • Curiosity and Compassionate

    Cathy and Beth are wonderful hosts. They bring their interest, compassion and curiosity to every interview. I love hearing peoples stories and learn.

    Apple Podcasts
    5
    KrissyD63
    United States2 years ago
  • Well done podcast

    Thank you Cathy and Beth for sharing such personal health issues. It was educational and informative, specifically how to deal with challenging medical issues, how and where to get help, and most important, to maintain a positive mindset to go forward. You both are an inspiration and I applaud your generosity for sharing your stories and for the work you continue to do for others. Best wishes to you both!

    Apple Podcasts
    5
    candy208433410
    United States3 years ago
  • Educates and Builds Community

    I thoroughly enjoyed listening to the trailer and the first three episodes of It Happened to Me. Cathy and Beth are providing a service by sharing their rare diseases and health challenges and providing a forum for others to do the same. This serves as community building for not only those facing health issues but also their family and friends and the medical professionals trying to diagnose, treat, and research rare diseases. I look forward to listening to all of the future episodes of this pod... more

    Apple Podcasts
    5
    JoeBaker5682
    United States3 years ago

Listeners Say

Key themes from listener reviews, highlighting what works and what could be improved about the show.

Professional, credible guests and informative discussions on genetics and health care.
Thoughtful hosts who shine a light on rare diseases and practical living with health challenges.
Empathetic hosts who focus on community and actionable guidance.

Chart Rankings

How this podcast ranks in the Apple Podcasts, Spotify and YouTube charts.

Apple Podcasts
#235
Philippines/Science

Talking Points

Recent interactions between the hosts and their guests.

#66 Not Just Fatigue: Global Advocating for ME/CFS from Bed
Q: How has living with ME-CFS affected your daily life and advocacy work, and what strategies sustain your capacity to drive awareness?
She explains energy budgeting, pacing, and reliance on family support, with advocacy conducted largely via Zoom to protect her energy while maintaining impactful outreach.
#66 Not Just Fatigue: Global Advocating for ME/CFS from Bed
Q: Elizabeth, what were the early challenges in your diagnostic journey and how did misdiagnoses shape your experience?
Elizabeth describes years of seeing multiple doctors who dismissed her symptoms as psychosomatic or misdiagnosed a variety of conditions, ultimately leading to a clear ME-CFS diagnosis after extensive personal research and persistence.
#62 Vision Through Music: Empowering Visually Impaired Kids with Adaptive Music Education
Q: What outcomes have you seen in children who participate in the program?
Children often show rapid musical development, learn music theory, begin composing, and gain confidence that translates into broader academic and personal growth.
#62 Vision Through Music: Empowering Visually Impaired Kids with Adaptive Music Education
Q: How does the Vision Through Music Registry help families find appropriate teachers and instruments?
The registry on visionthroughmusic.org is searchable by region and instrument, and it provides teacher bios and contact options so families can identify and connect with suitable instructors, whether for violin, piano, or other instruments.
#62 Vision Through Music: Empowering Visually Impaired Kids with Adaptive Music Education
Q: Now, Dr. Black, what inspired you to create the Vision Through Music Program? And how did you realize there was such a gap in music education for the visually impaired?
The inspiration came from recognizing that blind children often have inherent musicality and that existing curricula either didn't exist or weren't accessible. The program aims to bridge that gap by providing specialized teacher training, registry access to qualified instructors, and educational resources so these students can develop musical skills and confidence.

Audience Metrics

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Frequently Asked Questions About This Podcast

What is This Podcast about and what kind of topics does it cover?

The show centers on real people facing rare diseases and complex medical challenges, blending expert insight with personal storytelling. Episodes often pair clinicians, researchers, and advocates with patients or family members to explore diagnosis, treatment options, lived experience, and practical coping strategies. A standout element is its emphasis on community, advocacy, and actionable guidance for navigating healthcare, testing, and support networks, often weaving in genetics, mental health, and quality-of-life considerations. The format appears to value empathy and practical education, making it helpful for listeners seeking understanding, resources, and connection in the rare-disease space.

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These podcasts share a similar audience with this podcast:

1. Dateline NBC
2. Crime Junkie
3. 48 Hours
4. 20/20
5. The Daily

How many episodes of this podcast are there?

this podcast launched 3 years ago and published 87 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

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What guests have appeared on this podcast?

Recent guests on this podcast include:

1. David Traster
2. Drew Motiv
3. Ra-Jon James
4. Theresa Lyons
5. Kirsten Karshmer
6. Carolyn Routh
7. Meredith Mangold
8. Amy Patterson

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