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Patient Stories

A total of 268 posts are filed under Patient Stories
The Extraordinary Journey to Normalcy with Epidermolysis Bullosa
Emma Fogarty from Laois was born with epidermolysis bullosa (EB). Described as the “worst disease you’ve never heard of,” EB is a… Continue Reading
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NIH Helps Family Finally Achieve a Rare Diagnosis for Two Brothers
Story by Luke and Tyler’s mother, Jill Clegg. Tyler, our first child, was born in 2002. As first time parents, we only began to recognize… Continue Reading
Infant Daughter’s Unusual Seizure Urgently Sends Parents to Children’s Hospital
Emma was born on March 20, 2015 via c-section (planned-a repeat) after a healthy and normal pregnancy. She seemed to be a perfectly healthy… Continue Reading
The Long Road to a CVID Diagnosis in a Patient Who Refused to Give Up
It all started back in January of 2007. I was on a cruise ship and we were dock in St Thomas. I got sick on the second day of the cruise. I… Continue Reading
Mother of Ultra-Rare Infant Seeks Other Families for Support Wieacker-Wolff Syndrome: Melora’s Story
Melora didn’t move much in the womb, just enough to let us know her heart was still beating. Born in 2011, after bed-rest because of… Continue Reading
Loud Music Sets Off Rare Ear Disease in Nepalese Man
I work as a media person here in Nepal. Before the hyperacusis started, it was just a camera operator and me, working to shoot dance… Continue Reading
“We Remained Vigilant” How One Mother’s Actions Made for a Faster Diagnosis
Story by Lisa Moore Watching my son, Brennan, struggle to meet development milestones through the first two years of his life was possibly… Continue Reading
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