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Patient Stories

A total of 500 posts are filed under Patient Stories
Young Syrian Patient Faces Rare Disease Treatment Without His Parents
by Melissa Etehad for the L.A. Times At a time when many refugees fleeing war yearn for escape to America, Tony Alsabaa dreams of going home… Continue Reading
A Family Travels the World for Diagnosis of Rare Skeletal Dysplasia for Two Sons
By Nenna Janseen In 2008, Adam and I were planning to start a family. At the time, we were plagued by uncertainty and fear. Dozens of… Continue Reading
Kallmann Syndrome
The 24-Year-Old Late Bloomer: Kallmann Syndrome
I had a fairly uneventful childhood. I was a bit hard of hearing, was fitted for a hearing aid but rarely wore it. At senior school I was… Continue Reading
20-Years-Old With With May Thurner Syndrome
My name is Maria and I’m 20-years-old. I am from the island of Puerto Rico. I will be sharing my story of how I found out I have the May… Continue Reading
“Creating a Community” Around Ellie with Leukoencephalopathy
by Gillian Mohney Members of one Virginia family hope to bring attention to a rare disease that may cause paralysis or even death for their… Continue Reading
Levi’s Story: From ADHD to MPS III C
Levi was born on July 11th, 1998. He was a healthy 6lb, 7oz little boy. We had no clue at the time he was sick with a deadly disease. He… Continue Reading
How Astigmatism Saved My Daughters Life
When my daughter turned five-years-old, I had scheduled her a yearly check-up with her pediatrician. Just like every year Cienna appeared to… Continue Reading