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Archives for: October 15th, 2021

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

Saida’s Story of Strength

Written by Rohan Narayanan on October 5, 2021

I have been diagnosed with a rare chronic genetic disease called partial trisomy 8Q duplication syndrome since birth and I was also recently diagnosed with hidradenitis suppurativa (HS). My life has been full of challenges, and I want to bring awareness to what I go through so that anyone… 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

Gina and Gia’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 4, 2020

My daughter Gia was diagnosed at birth with the rare disease sickle cell. Gia has had 5 bouts with pneumonia, many stays in ICU, and nine blood transfusions. Sickle cell disease (SCD) is a genetic blood disorder that causes normal… Read More

Tucker’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 4, 2020

This story is about my husband, Tucker. In 2004, we began to notice that he wasn’t able to play guitar like he used to, as well as that he was stumbling and falling down more. We went to the doctor… Read More