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Archives for: September 30th, 2022

Honoring Steven Matthews This Rare Cancer Day

Written by Rohan Narayanan on September 30, 2022

September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of the rare cancer community – learn more.

The Chondrosarcoma Foundation is sharing the story of firefighter Steven Mathews in… Read More

Far From “Normal”: Brenda’s Rare Disease Story

Written by Rohan Narayanan on December 27, 2021

I’m as “normal” as anyone else. I look completely “normal” (besides being in an orthopedic brace), I act completely “normal,” and my life is completely “normal”. I have been married for 40 years and have two adult children and three grandchildren. I have worked with my husband in his private optometry practice for 20 years and help with the daily care of our 11-year-old grandson. My life is full, happy, active and busy – as “normal” as I may… Read More

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

From a Horse to a Zebra: Dana’s Rare Disease Story

Written by Rohan Narayanan on October 15, 2021

I was five years old, excitedly cheering on my mother at her softball game at City Park ball fields in Fort Collins, Colorado. She hit the ball and I jumped and cheered with the others in the bleachers. Then, my life changed. I slipped and fell through the bleachers…. Read More