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

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 chat through the 988 Lifeline. It supports people experiencing suicidal thoughts, emotional distress, mental health crises, and substance use concerns.

To honor May being Mental Health Awareness month we invited Drew Motiv to share his story of transformation through addiction, mental health struggles, and surviving suicide attempts, in this episode. Now a motivational speaker and founder of the Divine Family Movement, Drew opens up about the darkest chapters of his life and how he found his way toward healing, self-belief, and purpose.

We explore what it truly means to hit rock bottom, the isolation that can come with addiction and recovery, and the difficult work of rebuilding your identity after trauma. Drew reflects on the internal battles he faced, the moments that changed his path, and how he now uses his lived experience to help others feel less alone.

Beth and Cathy also talk with Drew about the emotional complexity of recovery, learning to trust yourself again, coping with lingering anxiety and darkness, and turning personal pain into public advocacy. His story is both deeply personal and broadly resonant for anyone navigating mental health challenges, addiction, or the long road back to themselves.

If you or someone you know is struggling, please use the resources below. 

Follow Drew Motiv on Instagram @Drew_Motiv

divinefamilymovement.com

Need support? If you or someone you know is in immediate danger, call 911 or go to the nearest emergency room. In the U.S., you can call or text 988 for the Suicide & Crisis Lifeline 24/7. For substance use or mental health treatment referrals, contact SAMHSA’s National Helpline at 1-800-662-HELP (4357). For text-based crisis support, text HOME to 741741. Veterans and service members can reach the Veterans Crisis Line by calling 988 and pressing 1 or texting 838255. For non-crisis support and local mental health resources, contact NAMI HelpLine at 1-800-950-NAMI (6264) or text NAMI to 62640. 

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 [email protected]. 

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 this episode he joins us to go deeper into the emotional and physical grit required to relearn how to stand, walk, and reclaim his independence.

Ra-Jon James is a GBS survivor and advocate. After his story went public following a local news appearance, he has dedicated himself to raising awareness about Guillain-Barré Syndrome and providing hope to others facing sudden neurological challenges.

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 [email protected].

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" for years isn’t just a physical challenge; it’s a relational one. Meredith joins hosts Cathy and Beth to discuss what it means to be truly supported when an illness doesn't have an end date. We dive into the nuances of communication, the "guilt of being too much," and the common mistakes well-meaning loved ones make when trying to "fix" a situation that can’t be fixed.

Whether you are navigating a chronic condition yourself or walking alongside someone who is, this episode offers a masterclass in empathy, validation, and the power of simply being believed.

Meredith Mangold, CPXP, is the Founder of Empower Health Strategies and a Certified Patient Experience Professional. After being thrust into the healthcare system at age 20 with severe ulcerative colitis, later followed by diagnoses of POTS and Ehlers-Danlos Syndrome, Meredith dedicated her career to helping healthcare professionals and digital health innovators empathize with the patient journey. She serves on the board of the Chronic Pain Project, is a faculty member for the BiteLabs Fellowship, and collaborates with Johns Hopkins Hospital on patient advocacy initiatives.

#17 Mental Health Help with Social Worker Tamara Blum

#25 Pancreatic Cancer with Patient Advocate Leslie Waldman

#38 Dr. Tara Zier on Stiff Person Syndrome

#66 Not Just Fatigue: Global Advocating for ME/CFS from Bed 

#76 When Pain Never Stops: A Survivor’s Story of Chronic Pain and Hope (Merdith’s First Interview)

#77 When Chronic Illness Changes the Tune: A Musician’s Journey Through Diabetes and Stroke

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 [email protected]. 

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, a platform designed to turn complex autism science into clear, practical guidance for families.

Dr. Lyons’ perspective is so powerful. She brings both rigorous scientific training and lived experience as the parent of a child with autism. She’s worked with families in more than 21 countries, helping parents move from fear and confusion to confidence and clarity.

Key Topics Discussed:

Resources: 

Dr. Thersea Lyons’ LinkedIn

Navigating AWEtism's Website 

Navigating AWEtism's YouTube Page

Psychology Today 

Autism Speaks 

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 [email protected]. 

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:

Resources: 

Conceivable Technologies 

ABORM - a reproductive acupuncture resource 

“If Men Could Menstruate" By Gloria Steinem

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 [email protected].

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 Giant Cell Arteritis (GCA), a serious inflammatory condition that can cause permanent vision loss if not treated immediately. Kathi was also diagnosed with Polymyalgia Rheumatica (PMR), a related autoimmune disease that causes widespread pain, stiffness, and fatigue.

Kathi has permanently lost vision in her right eye, but she has not lost her voice. In this powerful conversation, she shares what it’s like to go from “healthy” to navigating chronic autoimmune illness, how quickly symptoms can be missed or dismissed, and why awareness of GCA can be life- and vision-saving.

This episode is an important reminder that listening to your body, and acting quickly, can make all the difference.

Kathi wanted to share the following practical, evidence-informed strategies for adapting to vision loss in one eye. These resources do not replace medical care but may help support rehabilitation and daily functioning.

Important: Always consult your ophthalmologist or low-vision specialist before starting any new therapy, especially after GCA. 

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 [email protected].

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 Sunday Morning, Carolyn has built an extraordinary career in music. What many don’t see is the parallel journey she’s been navigating behind the scenes—living with Type I diabetes and recovering from multiple strokes.

Carolyn’s health challenges reshaped not only her life, but her art. During her stroke recovery, she taught herself to play bass, reinventing her role in the band and reclaiming her place on stage with a renewed sense of purpose. In this conversation, we explore what it means to pursue a demanding creative career while managing chronic illness, how music can become part of healing, and what resilience really looks like when the unexpected changes everything.

In This Episode, We Discuss:

Resources: 

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 [email protected]. 

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. Meredith lives with ulcerative colitis, chronic abdominal and pelvic pain, and a constellation of overlapping medical conditions that left her bedbound for years and searching desperately for answers.

As a college student, Meredith landed in the ICU with toxic megacolon, a rare and life-threatening complication of inflammatory bowel disease. What followed were multiple major surgeries, escalating pain, and an exhausting cycle of treatments, including opioids, ketamine, spinal cord stimulation, and repeated detox attempts, none of which provided lasting relief. At her lowest point, Meredith’s pain hovered at an 8 out of 10 daily, her world narrowed to her bed and doctors’ appointments, and hope felt out of reach.

In this conversation, Meredith courageously shares what it’s like to live with unrelenting pain, the emotional toll of medical trauma, and the devastating impact chronic illness can have on mental health, identity, and self-worth. She also opens up about medical dismissal, the difficulty of managing multiple diagnoses, and the isolation that so many chronic pain patients quietly endure.

After years of setbacks, Meredith found a turning point through a personalized, multidisciplinary approach to pain management, one that treated her as a whole person, not just a diagnosis. While her pain hasn’t disappeared, it has become more manageable, allowing her to reclaim pieces of her life she once believed were gone forever.

Today, Meredith is the founder of Empower Health Strategies, where she uses her lived experience to help healthcare organizations and digital health companies build more patient-centered solutions. Her story is a powerful reminder that progress doesn’t always mean being pain-free, sometimes it means being heard, believed, and given the chance to rebuild.

This episode is for anyone living with chronic pain, loving someone who is, or working in healthcare and seeking to better understand the human cost of untreated and misunderstood pain.

Meredith, thank you for your honesty, vulnerability, and advocacy. Your story gives voice to so many who are still struggling, and reminds us all that healing can take many forms.

During the episode we mentioned Hopkins Medicine’s spotlight on Meredith and a previous episode of It Happened To Me, #40 Overcoming Crohn’s Through Pilates with Ryan Hodgkinson.

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 [email protected]. 

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 before our new episodes of 2026 kick off. 

Genetic Counselor Amy Patterson shares about genetic screening and testing available for rare disease including her speciality of skeletal dysplasias. 

Amy Patterson (she/her) is a licensed pediatric and adult genetic counselor in the Johns Hopkins Department of Genetic Medicine. She primarily works with patients in the Greenberg Center for Skeletal Dysplasias as well as the General Genetics clinic. Especially in the skeletal dysplasia space, Amy works to promote a holistic patient experience, including psychosocial counseling, connection with patient advocacy groups, informed consent, genetic testing and interpretation of results, coordination of care, and discussion of research options. Amy was a LEND Fellow and graduated from the Boston University Genetic Counseling program in 2021. She has focused much of her research and clinical work on the intersection of rare conditions, disability, and patient advocacy.

Amy initially started advocating in the rare disease space due to her best friend’s sibling’s rare genetic disorder, Congenital Hyperinsulinism. We actually interview their mother on Episode 37 of It Happened To Me. As a high schooler, Amy started educating their peers and community about rare disease on Rare Disease Day every year. After moving to Boston, she started volunteering at a Community Engagement Liaison for the Rare Action Network (RAN), the advocacy branch of NORD, then became the RAN Massachusetts State Ambassador. Through this work, she started putting on Rare Disease Day events at Boston Children's Hospital, and now at Johns Hopkins Hospital as a genetic counselor. Rare Disease Day allows all rare disease stakeholders to come together to share their experiences and continue to learn. Amy is passionate about this global effort to raise awareness and advocate for improved quality of life, diagnosis, and access to care for Rare patients and families.

Want to listen to our other episodes with genetic counselors? 

In Episode 4, our Executive Producer, Kira Dineen, who is also a genetic counselor, shares how genetic counselors can help people navigate having a rare disease. 

In Episode 7, Genetic Counselor Karen Grinzaid explains prenatal and cancer genetic testing. Kira also joins as a guest host since this is her area of expertise. 

Want to speak to a genetic counselor? Find one in your area via FindAGeneticCounselor.org.  

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 [email protected]. 

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 treatment, and beyond. With this in mind, we want to revisit an episode that takes a more macro view on rare diseases. 

If you're a long time listener of the show, you may know Kira Dineen is not only produces the show, but is also a practicing genetic counselor, so we thought it would be interesting to bring her in front of the mic in this episode to talk about how genetic counselors can help those in the rare disease community. 

Genetic Counselor, and our podcast co-producer, Kira Dineen shares her insight on when to pursue genetic counseling and how genetic counselors can help people in the rare disease community.

Co-producer Kira Dineen, MS, LCGC, CG(ASCP)CM has over a decade of podcast experience fueled by a passion for science communication. She has hosted and produced 7 podcasts. Her multi-award winning podcast, "DNA Today", is in the top 1% of podcasts globally. She was accepted into The Podcast Academy and has served as a Blue Ribbon Panelist for The Ambies. Kira received her Diagnostic Genetic Bachelor’s of Science degree at the University of Connecticut and is a certified Cytogenetic Technologist. She received her Master’s of Science in Human Genetics at Sarah Lawrence College in New York and is a licensed certified genetic counselor currently practicing in Connecticut. 

On This Episode We Answer:

When should a person or couple consider genetic counseling?

Is a referral required to see a genetic counselor?

Does insurance cover genetic counseling for this?

Is genetic testing done before the visit? 

How many visits are we talking about?

Do you ever suggest adoption as an option? When?

How do you help people with genetic conditions?

Why get tested at all?

What have you learned from interviews with patients and rare disease advocates?

Do you recommend joining rare disease advocacy groups?

Why study rare diseases?

What is CRISPR? How could this help treat…or even cure…genetic conditions? 

You produce a rare disease podcast that focuses on nano rare diseases. What’s a nano-rare disease?

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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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 [email protected].