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Patient Stories

A total of 140 posts are filed under Patient Stories
Sickle Cell Patient Knows “Any Day Without Pain is a GOOD Day!”
Shakir is an activist for Sickle Cell Disease awareness and research. Shakir currently resides in Clifton Park, NY, but he grew up in the… Continue Reading
Evies Journey with Infantile Neuroaxonal Dystrophy
Evie was always a happy and content baby, and was reaching all of her milestones – rolled over, sat up, crawled, babbled, all from an… Continue Reading
“I May Be Rare, But I Am Still Me” Mom with EDS Demands Diagnosis
I have had random back and neck pain since I was a young teen. After more then a decade of hearing “you’re too young for back pain,”… Continue Reading
Rylie’s Smile: Tooth Pain and Puffy Face Leads to Aggressive Giant Cell Granuloma Diagnosis
Rylie started her foundation, Rylie’s Smile Foundation, to help other children who are battling for their lives with a rare disease or… Continue Reading
Twin Diagnosis: Angelman Syndrome and the Bjorklund Girls
Anika and Sophia Bjorklund, identical twins who are now 6-½ years old, were born premature and spent 25 days in the NICU because of feeding… Continue Reading
Drew “Our Sweet Warrior” with Campomelic Dysplasia
Up until our 28 week ultrasound, our sweet baby boy, Drew, had looked perfect on every ultrasound. It was at that time, however, we learned… Continue Reading
KFS Patient Joined Group Looking For Support But In The End Found Love
My name is Barry and I know that it is truly a miracle that I found Gera. See, we have something in common that most couples don’t. It’s… Continue Reading