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Patient Stories

A total of 436 posts are filed under Patient Stories
Woman Suffers from Rare Disease that Causes Her Nose to Grow at an Extreme Rate
At age 46, Pamela Ichard is afraid to leave the house. The Louisiana native suffers from Rhinophyma, a rare skin condition that causes… Continue Reading
Born with Barth Syndrome and Beating the Odds
Thanks to the Barth Syndrome Foundation and author Donna Strain for this article. I never got to meet my brother. Martin was born two years… Continue Reading
On a Limb and a Prayer: Diagnosed with Klippel Trenaunay Syndrome
Three-year-old Akshaj sounds mature for his age. But his precocity may have come at a significant cost. Akshaj suffers from Klippel… Continue Reading
Wally Travels Worldwide for Cantú Treatment
Wally was born at 34 weeks October 16th, 2014. He was diagnosed with Syndrome Cantú at four months old. In early 2016, genetic results… Continue Reading
Rachel’s 15 Year Journey Towards Helsmoortel-Van der Aa Syndrome Diagnosis
Rachel was born in November of 2000. She was born 2lbs 9oz at 32 weeks she was taken out due to no growth since 4 months gestation. She was… Continue Reading
Great Dane Becomes Best Friend for Girl With Morquio Syndrome
This past summer, Bella Burton, 11, was riding a bike and walking on her own for the first time – thanks to a lot of help from her best… Continue Reading
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Advocating for Aleigha
by Aleigha Rankin Writing an illness blog, running an advocacy page, and raising awareness in order to survive isn’t something I ever saw… Continue Reading

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