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 honest glimpse into the realities of this often misunderstood disorder. Whether you're facing a medical mystery of your own or simply curious to learn about rare conditions, you won't want to miss Bethany's inspiring story of resilience. Tune in now and please share to spread awareness! #KleineLevinSyndrome #SleepingBeautySyndrome #RareDisease #Narcolepsy #SleepDisorders #MedicalMysteriesSolved #MedicalResearch #UnusualDiagnosis

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

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 difficulties of navigating the complex medical system while fighting for her son's life. Yet through it all, her steadfast faith, unconditional love, and Jackson's indomitable spirit shine through. Brooke also shares words of wisdom for supporting families of children with cancer, disabilities or special needs. This unforgettable story will move you to tears, inspire you with hope, and motivate you to spread more compassion. Because no matter the prognosis, a mother's love knows no bounds. #PilomyxoidAstrocytoma #ChildhoodCancer #BrainTumor #SpecialNeedsParenting #MiracleChild #MothersLove #Autism #Faith #MedicalMaze #PodcastEpisode

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 the autism spectrum.

In this riveting episode, we explore the critical distinction between autism awareness and true acceptance. Phil's words serve as a poignant reminder to reserve judgment, lead with empathy, and fight for a world that embraces and supports those who are different.

Don't miss this profound conversation that will open your eyes, touch your heart, and ignite your sense of compassion. Together, let's navigate the complex realities of autism and forge a path toward genuine understanding.

Like and subscribe for more illuminating stories from the frontlines of undiagnosed and rare diseases. Leave a comment sharing your thoughts on how we can promote autism acceptance beyond April!

Visit autismspeaks.org

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#AutismAwarenessMonth #AutismAcceptanceMonth #SevereAutism #AutismParenting #AutismAdvocacy #MedicalMaze #RareDisease #UndiagnosedDisease

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 resiliently builds a life for herself and her family.

Cameron pulls back the curtain on the daily sacrifices required to manage sickle cell, from strict dietary changes to navigating relationships and work around her hospitalizations. You’ll be moved by her strength, uplifted by her hope, and gain new empathy for the silent struggles of those living with invisible disabilities.

Reach out and show your support with words of kindness in the comments below. And help spread understanding of this lesser-known disease by sharing this eye-opening testimony with your own community.

Key hashtags: #InvisibleIllness #SickleCellDisease #SickleCellStories #ChronicIllness

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 cognitive ability and quality of life. Dan also elaborates on the challenges of affording expensive PKU supplements and restricted food options. He stresses the importance of raising global PKU awareness so patients outside the US and UK can access vital treatment. This riveting episode covers the symptoms, diagnosis and daily realities of living with this lesser known disorder that can profoundly alter one’s life trajectory. A must-listen for rare disease advocacy! Visit Dan's Blog: https://thetruthaboutlifewithpku.home.blog/ #PKU #phenylketonuria #raredisease #advocacy #awareness #podcast

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 losses. Jim provides an honest, uplifting outlook on coping with this lesser-known disease. Get Jim's insider view into assistive devices, disability accommodations, and his admirably encouraging mindset. He gives real examples of how to adjust when facing adversity and stay positive. A must-listen for anyone seeking stories of inspiration when dealing with rare disabling conditions. #raremusclewastingdisease #inclusionbodymyositis #IBM #positivity #inspiration #disability #mobility