Post Views: 16 Will Tyson: A Heartfelt Advocate Will Tyson lives with a rare genetic heart disease called cardiomyopathy, just like his father, Mark. Their shared diagnosis changed everything, but instead of staying silent, Will chose to speak up. At 19, Will collapsed while playing basketball. That moment led to a life of medical care, …
Cardiomyopathy Journey: Our Family’s Story of Resilience and Hope Read More »
Post Views: 175 Archith At our platform, we believe the most powerful insights come not just from research and statistics, but from lived experience. Today, we are honored to share the story of Michael Turner, a 42‑year‑old father of two from Austin, Texas, who is living with Huntington’s disease. Michael’s journey is one of resilience, …
4 Inspiring Ways to Cope with Huntington’s Disease: Michael’s Story Read More »
Post Views: 214 Archith Garry isn’t just a writer, he’s a survivor and a guide. Living with Hashimoto’s Thyroiditis, a chronic autoimmune condition, he knows firsthand the daily challenges of managing health while trying to live fully. Through his blog, Garry shares how adopting a gluten-free lifestyle transformed his journey. What once felt like survival …
7 Ways How A Gluten Free Diet Helped My Chronic Disease Read More »
Post Views: 292 Archith When we hear the word pancreas, most of us think of diabetes. But… Our pancreas is far more than a sugar regulator. It’s a small, leaf-shaped organ tucked behind the stomach that quietly runs some of the most important processes in our body. It produces enzymes that help digest food and …
Incurable Pancreatic Disease: Causes, Treatments & Patient Hope Read More »
Post Views: 677 Q-1) Could you describe your story from getting diagnosed to having been cured? A-1: I started experiencing Morgellons disease symptoms when I was 24. I had all the hallmark symptoms of the disease. Deep, slow-healing lesions, fibers protruding from the unbroken skin, brain fog, and fatigue. I had no idea what Morgellons disease …
Morgellons Disease: Symptoms, Causes & Controversies Explained Read More »
Post Views: 323 Archith Louis is as brave as his name suggests, facing every challenge with remarkable courage. He lives with Morvan syndrome, a rare condition that tests both body and mind, yet he continues to turn his struggles into strength. In this blog, Louis discusses his symptoms and the lessons he has learned along …
13 Extraordinary Ways to Combat Fatigue and Gain Energy Read More »
Post Views: 267 I’m Liam, father to a bright, funny, and determined girl named Orla. She’s 14 now, and if you met her, you’d probably notice her laughter before anything else. It fills a room, and it’s the kind of laughter that makes you forget your worries for a moment. But behind that laughter is …
Aarskog Syndrome: Signs, Supporting Families, and Navigating Rare Diagnosis Read More »
Post Views: 507 Archith Living with a rare neurological condition called Kleine-Levin Syndrome (KLS) can often feel like walking an uncharted path where answers are scarce, treatments uncertain, and hope must be carved out of resilience. Today, I share the journey of a patient from India, Tavish, who has chosen to navigate this path uniquely: …
Natural Hot Springs: 5 Proven Healing Benefits for Rare Diseases Read More »
Post Views: 182 When Jasper was born, I thought my life had found its brightest light. His tiny fingers curled around mine, and I whispered promises of protection, love, and endless tomorrows. Like every mother, I dreamed of his first steps, his first day at school, his teenage years, and the man he would one …
Living with Progeria: My Son, My Teacher and Our Rare Disease Journey Read More »
Post Views: 103 A Breath of Perspective When we think of incurable lung diseases, the first images that come to mind are oxygen masks, hospital corridors, and endless coughing. But… What if I told you that some patient journeys are filled with resilience and even quirky life hacks? This is the story of Chintan, a …
Idiopathic Pulmonary Fibrosis: 5 Ways to Live Joyfully with It Read More »
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