Episodes

Have you heard of Kleine Levin Syndrome (KLS) or "Sleeping Beauty Syndrome"? In this captivating episode of The Medical Maze podcast, we sit down with Bethany, who bravely shares her journey living with this extremely rare condition that causes her to sleep for weeks at a time. Bethany discusses the challenges of getting diagnosed, the major impacts KLS has had on her life, relationships and ability to work and attend school, and how medication has helped manage her condition. She provides an ho...

Join us on a fascinating journey as we delve into the world of Jordan syndrome with Michelle and her daughter. Discover the unique challenges and triumphs faced by individuals living with this ultra-rare neurological disorder. #medicalpodcast #raredisease #disease

Join us for an inspiring discussion with Molly, a living liver transplant recipient, as she shares her journey during Donate Life month. Find out how a close friend changed her life through organ donation and learn how you can make a difference at registerme.org. Subscribe for more heartwarming stories and important insights on organ donation! #organdonation #psc #organtransplant

As April comes to a close, we at The Medical Maze podcast honor Autism Awareness/Acceptance Month with a raw and unflinching look at the often misunderstood world of severe autism. Join us as we sit down with Phil, the father of 11-year-old Dominic, who bravely shares his family's heart-wrenching journey. From communication barriers to public meltdowns to the desperate search for proper care and education, Phil gives us a powerful glimpse into the challenges faced by those on the lowest end of t...

In this powerful and moving episode of The Medical Maze podcast, host Don-Ellen Ray has an intimate conversation with her cousin Brooke Abner about her son Jackson's courageous battle with a rare brain tumor called Pilomyxoid Astrocytoma. Brooke vulnerably shares the heartbreaking challenges and miraculous triumphs her family has faced over 12 years as Jackson defied all medical odds. From misdiagnosis to hemorrhages to chemotherapy to special needs, Brooke opens up about the unimaginable diffic...

Can you imagine living every day with shards of glass slicing through your veins? That’s the agonizing reality for my courageous guest Cameron, who shares her deeply personal story of fighting sickle cell anemia since birth. Even the slightest weather change or emotional stress can trigger grueling, week-long hospitalizations filled with piercing pains, blood transfusions, and breathing treatments just to survive another day. Despite the cruelty of this unpredictable illness, Cameron resil...

We speak with Dan Ellmer, who was diagnosed with the rare inherited metabolic disorder phenylketonuria (#PKU) as a child. He shares his remarkable story of living with this condition that causes intellectual disability if undiagnosed. Dan explains what PKU is, how it's screened for at birth in some countries, why early diagnosis is critical, and how the required life-long low protein diet keeps symptoms at bay. We discuss the devastating effects of untreated PKU, including its impact on cognitiv...

Watch Jim Mathews share his personal perspective on inclusion body myositis (IBM), a rare muscle-wasting disease. He explains common misdiagnoses like ALS, details on IBM's gradual effects, information on clinical trials and latest research, how exercise temporarily improves strength, and more. Throughout the interview, Jim maintains an incredibly positive attitude despite IBM's disabling impacts on mobility and dexterity over time. He focuses on what IBM patients can still do versus mourning lo...

Miguel shares his struggle with an extremely rare condition that causes him to emit chemicals from his skin that trigger severe allergic reactions in others. He describes living with this little-known syndrome called PATM (People Allergic to Me) that makes social situations unbearable. Miguel reveals how he found out he had PATM in his teens and the debilitating physical and emotional toll it's taken. With no known cure, Miguel hopes to spread awareness and urges more research be done to help p...

Rosa M. Rodriguez shares her incredible story of surviving stomach cancer and living without a stomach since age 26. Rosa was diagnosed with the rare genetic disease FAP (Familial Adenomatous Polyposis) at age 12, requiring surgery to remove her colon. By 26, Rosa developed aggressive stomach cancer, forcing total stomach removal. Now 39, Rosa has coped for 13 years living with no stomach. She discusses her symptoms, surgeries, emotional journey, specialized diet, and more. Rosa's story of resil...

We uncover the heartbreaking and isolating reality of parenting a child with severe autism and developmental delays. Hear the raw truth from Phil, father to an 11 year old nonverbal son, as he shares their painful story of violence, judgment and a "1 in a million" neurological case. This episode pulls back the curtain on the relentless challenges faced by families battling lower-functioning autism. Rare stories like Phil's aim to bring awareness and support for parents enduring this silent st...

Sarcoidosis is a mysterious condition that can strike any organ in the body. It causes tiny inflammatory granulomas that wreak havoc. Terri describes the confusing, relentless symptoms that plagued her for years before finally getting a sarcoidosis diagnosis. Listen as Terri shares her story of dealing with this “snowflake disease,” where no two cases are alike. From lung and skin issues to joint pain, extreme fatigue and more, Terri paints a picture of how sarcoidosis disrupted her life. Even n...

Molly was diagnosed with primary sclerosing cholangitis (PSC) at just 9 years old. Now 29, she urgently needs a liver transplant to survive. This rare disease causes severe liver damage and cirrhosis. Molly's condition is rapidly deteriorating. She describes living with worsening fatigue, brain fog, and malnutrition as toxins build up in her body. Yet PSC patients often can’t get transplants in time. Molly was told she likely only has 1-2 years before it’s too late. Her only hope is a living liv...

In this episode of The Medical Maze, host Don-Ellen interviews Sara about her experiences living with Turner syndrome. This rare chromosomal disorder only affects females and can cause short stature, heart abnormalities, hearing loss and other symptoms. Sara shares her journey getting diagnosed as a child, being bullied for her height, and learning to advocate for herself and other "butterfly sisters." She describes the treatments she's undergone, including growth hormones and hormone replacemen...

Alison shares her decades-long struggle living with an undiagnosed auto-inflammatory disease and a myriad of other chronic health conditions. Diagnosed with Crohn's disease at age 7, she began suffering from extreme gastrointestinal symptoms and complications that have continued into adulthood. However, Alison also experiences many perplexing symptoms unrelated to her Crohn's, including severe fatigue, migrating arthritic pain, Raynaud's phenomenon, and random inflammation flare-ups on her bo...

Join Don-Ellen Ray and Phil as they discuss the brand new podcast "The Medical Maze: Decoding Misunderstood Diseases". Learn what the podcast is about and what's to come! #undiagnosedillness #medical #medicalpodcast

In this inaugural episode of The Medical Maze" join your host Don-Ellen Ray as she courageously shares her personal journey with Lipedema. Through raw authenticity and vulnerability, Don-Ellen takes us on a profound exploration of the challenges, triumphs, and lessons learned from living with this often misunderstood condition. Don-Ellen recounts the early signs and symptoms that initially perplexed her, leading to a journey of misdiagnosis and confusion. She vividly describes the physical and e...

In the complex realm of healthcare, where understanding is often obscured, welcome to "The Medical Maze: Decoding Misunderstood Diseases." Join us on an illuminating journey as we navigate through the intricacies of medical mysteries. With a focus on shedding light on misunderstood illnesses, our podcast unravels the complexities and misconceptions surrounding these conditions. Through engaging discussions, expert insights, and real-life stories, we empower listeners to decipher the enigma of mi...