Post Views: 19 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: 125 Archith Allergies are often brushed off as “just sneezing” or a seasonal nuisance. But as Dr. Dayanashre K reminds us, they deserve a closer look. In India, where our environment and food habits are so diverse, allergies can show up in unexpected ways from everyday triggers like dust and pollen to less …
Allergies Uncovered: Triggers, Rare Conditions & Breakthrough Treatments Read More »
Post Views: 307 Archith James Smith is the co‑founder of the Foundation for Hao‑Fountain Syndrome, a global initiative born from his family’s own rare disease journey. When his daughter was diagnosed with Hao‑Fountain Syndrome, James transformed years of uncertainty into a mission: to connect families, accelerate research, and advocate for better access to care. Because …
Hao-Fountain Syndrome (USP7): Patient Stories and Research Read More »
Post Views: 176 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: 320 Archith This insightful blog was written exclusively for Ordinarily Rare by Dr. Jyoti Singh, a seasoned nutritionist with deep expertise in renal diet planning. With years of experience guiding patients through the complexities of kidney care, Dr. Singh brings a rare blend of clinical precision and cultural sensitivity to her work. Her …
Indian Renal Diet Plan: Nourish Your Kidneys with Authentic Food Wisdom Read More »
Post Views: 216 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: 662 Archith At Ordinarily Rare, we feature voices that bring clarity and hope to those living with uncommon health journeys. One such voice is Guru Prakash Iyer, an Iyengar Yoga teacher based in Pune, Maharashtra. It is the city where B.K.S. Iyengar built his global legacy. With years of experience in Iyengar Yoga …
4 Ways Iyengar Yoga Works for Chronic and Rare Diseases Read More »
Post Views: 293 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: 678 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: 660 Archith We are delighted to share an insightful article by Dr. Aravind Subramanian, an Ayurvedic physician from Chennai. With years of experience and a deep respect for India’s healing traditions, Dr. Aravind writes to help us understand Ayurveda in a way that feels practical and approachable. In this piece, he focuses on …
Ayurvedic Expert’s Guide to Healing Rare and Chronic Diseases Read More »
You cannot copy content of this page