Post Views: 84 This blog is one such celebration, a moment of gratitude for the Universe. It has continuously blessed me with resilience, recovery, and the gift of health. Living with rare and chronic illnesses isn’t just a medical challenge. It is an emotional and spiritual expedition that requires navigating unpredictable terrain. It is about …
Post Views: 144 First off, thank you, Universe. Every day I wake up, I feel blessed. Recovery isn’t linear, nor is health, but both are worth fighting for. If you’re reading this blog, welcome to my world of reflection, resilience, and extensive research. In 2016, my life took a dramatic turn. I was diagnosed with …
How Ancient Wisdom Changed the Way I See Illness Read More »
Post Views: 153 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: The Day Everything Changed for the Family Read More »
Post Views: 297 As 2025 draws to a close, one story rises above the noise, reshaping both India’s health and business landscape. Microsoft’s bold investment in Artificial Intelligence (AI) isn’t just fueling economic growth; it’s rewriting what care can feel like. From faster diagnoses to district clinics suddenly empowered with specialist knowledge. AI is transforming …
Can Artificial Intelligence Really Change the Future of Rare Diseases? Read More »
Post Views: 491 First off, thank you, Universe. Every day, I wake up feeling blessed. Recovery isn’t linear, nor is health, but both are worth fighting for. If you’re reading this blog, welcome to my world of reflection and resilience. The First Whispers It began with whispers. Not voices, but signals that were strange, insistent …
How Thinking Differently Changed the Way I Handle Illness Read More »
Post Views: 190 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 …
Post Views: 389 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): Real Stories from a Condition Medicine Is Still Unraveling Read More »
Post Views: 244 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, …
Huntington’s Disease: The Part No One Told Michael About Read More »
Post Views: 424 Gratitude is my morning mantra. Every heartbeat and step forward in recovery is a blessing I don’t take for granted. So, dear Universe, thank you. You continue to bless me with health and the strength to persevere. Introduction: When My Life Became a Punchline Back in 2016, my life took a drastic …
What My Illness Taught Me About Pain, Life, and Meaning Read More »
Post Views: 386 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 …
Renal Health: Indian Foods That Heal –And Harm –Your Kidneys Read More »
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