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Patient Stories

A total of 351 posts are filed under Patient Stories
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A Diagnosis of Primary Immune Deficiency Disease: What Took So Long?
by Betty Filippelli-Gordon I fell sick at age four, the cause of which, we assumed was a leak in a sewer pipe that traveled through my… Continue Reading
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The PHight or Flight Project: How The Voice of One Pulmonary Hypertension Patient is Inspiring Others
by Serena Lawrence In October of 2013 I started to notice that I had some shortness of breath. At first, I just assumed it was seasonal… Continue Reading
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Life With Medical Zebra Stripes: My EDS Diagnosis
I’ve yet to meet many other Ehler’s-Danlos Syndrome patients who can recall the exact date the syndrome changed their lives forever, but… Continue Reading
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Twice Blessed? Two Rare Diseases in One Lifetime?
When I was two years old, I was diagnosed with Coats Disease, which resulted in the removal of my left eye. When I was 40, I went in to see… Continue Reading
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Hallermann Strieff Syndrome: 32 Surgeries for 14-year-old Boy
My son, Devin, is 14-years-old. Devin had his first surgery when he was just 6-months-old and we stayed in the hospital for 46 long days in… Continue Reading
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Ten Years Ago We Were Told His Disease Was “Not Compatible with Life.” They Were Wrong.
During our first ultrasound scan we were told there was a problem, the scan four weeks later confirmed a chromosomal anomaly, one or a… Continue Reading
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Sophia’s “Kicking CASK and Taking Names” Event in Edgewater Park, NJ, March 19th
The Event  Hundreds of teams from all over the world participated in the  2016 Denim Dash Virtual 5K by Global Genes. The top earning… Continue Reading