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Archives for: October 29th, 2021

Five Disorders: Dee’s Rare Story

Written by Rohan Narayanan on October 29, 2021

I have five rare disorders: Chiari malformation, intracranial hypertension, chronic Epstein-Barr virus (EBV), fibromyalgia, Hashimoto syndrome, along with a plethora of other illnesses. An infectious disease doctor once told me that I was a poster child for the medical field. However, my journey with rare disease began far before I was diagnosed in 2009. 

Living with a rare disease makes you grateful for everything that most people take for granted. Four brain surgeries… Read More

Loneliness, Connection and Mesothelioma: Tamron’s Rare Disease Story

Written by Rohan Narayanan on September 30, 2021

I was diagnosed with peritoneal mesothelioma in 2007 as a 21-year-old new mother. When the doctor told me I had peritoneal mesothelioma, I didn’t know what it was. I was overwhelmed with shock and confusion with so many questions about this rare disease and how little information seemed available. Mostly, I felt alone. Feeling alone… Read More

Alone we are rare. Together we are strong.®