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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
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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
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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
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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
nathanielshope.og
#AutismAwarenessMonth #AutismAcceptanceMonth #SevereAutism #AutismParenting #AutismAdvocacy #MedicalMaze #RareDisease #UndiagnosedDisease
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Can you imagine living every day with shards of glass slicing through your veins?
Thatâs 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. Youâll 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
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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 oneâs life trajectory. A must-listen for rare disease advocacy!Visit Dan's Blog: https://thetruthaboutlifewithpku.home.blog/#PKU #phenylketonuria #raredisease #advocacy #awareness #podcast
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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
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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 people suffering from this socially isolating condition.
Hashtags:#PATM #allergies #rareconditions #allergicreactions #chemicalallergies #allergyawareness #skindisorder
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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 resilience while battling a rare cancer at a young age will inspire you.Don't miss this riveting interview!#StomachCancer #CancerSurvivor #MedicalStory #RareDisease #NoStomach #GastrointestinalSurgery #FAP #geneticdisease
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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 struggle.
#MedicalMaze #Autism #AutismAwareness #SpecialNeeds #RareDiseases #Parenting #Neurodiversity #InvisibleDisabilities #Healthcare #MentalHealth
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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 âsnowflake disease,â 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 now, she battles flares through a complex regimen of medications and diligent healthcare.Sarcoidosis is often misdiagnosed, as symptoms mimic other conditions like cancer, arthritis and autoimmune disorders. Terriâs experience highlights the importance of raising awareness. Join us in learning more about this baffling, destructive and unpredictable disease.Learn more about sarcoidosis: https://www.stopsarcoidosis.org/what-is-sarcoidosis/#Sarcoidosis #AutoimmuneDisease #RareDisease #MedicalMaze #Podcast
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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 canât get transplants in time. Molly was told she likely only has 1-2 years before itâs too late. Her only hope is a living liver donor. These selfless heroes can donate part of their liver, which fully regenerates in 6-8 weeks!Could you be the match that saves Mollyâs life? Listen to her incredible story and learn more about being a living organ donor. Use the link below to start the application process. You could give Molly and others like her the second chance they desperately need!Learn more about living liver donation: https://www.hopkinsmedicine.org/transplant/programs/liver/living-donor-liver-transplant#LiverTransplant #LivingDonor #RareDisease #MedicalMaze #PrimarySclerosingCholangitis
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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 replacement. Sara stresses the need to educate doctors on Turner syndrome, as many are unfamiliar with the condition when women come to them for care.Living with Turner syndrome is a day-to-day challenge, but Sara maintains a positive attitude. Her supportive husband and son keep her outlook bright. Listen to Sara's inspirational story and learn more about this complex disorder. Gain insight into the struggles and triumphs of living with Turner syndrome.Check out the Turner Syndrome Society website for more info: https://www.turnersyndrome.org/Hashtags:#turnersyndrome #raredisease #geneticdisorder #MedicalMaze #podcast
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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 body triggered by stress. Despite endless tests and specialist referrals, the source of these strange symptoms continues to evade diagnosis.In this emotional episode, Alison opens up about her childhood blockage from Crohn's medications, the isolation of dealing with chronic illness as a kid, being dismissed by doctors, and the frustration of unexplained symptoms. She also shares how her health impacts dating, work, and everyday life.
After decades without answers, Alison has a new referral to the National Institutes of Health, which offers hope for finally discovering what auto-inflammatory condition may be behind her myriad of symptoms.
Hashtags:
#AutoInflammatoryDisease #Undiagnosed #ChronicIllness #CrohnsDisease #Arthritis #Disability #RareDisease #InvisibleIllness #Spoonie #YoungPeopleWithLupus #RheumatoidArthritis #Health #Wellness #PatientStory #MedicalJourney #Advocate
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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
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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 emotional toll Lipedema has taken on her life, from the excruciating pain and fatigue to the impact on her body image and self-esteem.With unwavering honesty, Don-Ellen delves into the frustration of searching for answers, seeking a diagnosis, and finding appropriate treatments. She shares the pivotal moments that ultimately led to the discovery of Lipedema, a transformative revelation that brought validation and a sense of community.Throughout the episode, Don-Ellen addresses the misconceptions and challenges she has encountered along the way, shedding light on the often unseen struggles faced by those with Lipedema. She highlights the importance of self-advocacy, self-care, and seeking support from medical professionals and fellow individuals living with the condition.As Don-Ellen reflects on her journey, she offers invaluable insights, tips, and empowering messages of resilience to listeners who may be navigating their own paths with Lipedema. Her story serves as a beacon of hope and a reminder that no one should face this journey alone.Join us for this deeply personal and enlightening episode, as we embark on a journey of understanding, compassion, and unity. Together, let's uncover the unseen, celebrate the strength within, and forge a connection that empowers us all on our Lipedema journeys.#MedicalMaze #LipedemaLink #LivingWithLipedema #LipedemaJourney #LipedemaAwareness #LipedemaSupport #LipedemaCommunity #LipedemaWarrior #ChronicIllness #InvisibleIllness #RareCondition #HealthAndWellness #BodyPositivity #SelfCare #Empowerment #HealthAdvocacy #MedicalAwareness #DiseaseEducation #HealthEducation #SelfLove #Inspiration #Resilience
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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 misunderstood diseases. Prepare to delve into the depths of medical knowledge, as we decode the intricacies of these conditions and guide you towards a deeper understanding. Get ready to navigate "The Medical Maze" and uncover the truths behind these often-misunderstood diseases.
