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Patient Stories

A total of 98 posts are filed under Patient Stories
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Sara’s Army: My Fight Against Chronic Intestinal Pseudo Obstruction
Submitted by Sara Gebert Chronic Intestinal Pseudo Obstruction. CIPO. The four word, abbreviated four letter diagnosis that was inevitable.… Continue Reading
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Charlea With Niemann-Pick Type C
A 12-year-old girl is battling a rare disease that is also causing her to suffer from dementia. Charlea Armstead, from Oldham, England, was… Continue Reading
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The Face of Bartter Syndrome: Ethan’s Cure
Imagine knowing something is wrong with your baby, but medical professionals cannot provide a diagnosis. Frustrated and scared, you spend… Continue Reading
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Family Needs Help Relocating Sons with Pompe For Medical Care
My name is Jenni, I live in Adrian, Missouri (60 miles south of Kansas City Missouri) - and I need your help. Our sons Gavin (22 months… Continue Reading
TEAM-AIDEN
A Twist of Fate – Arterial Tortuosity Syndrome
Aiden was two when he had two separate hospital stays about six weeks apart for a pneumonia type illness. It wasn’t until the second… Continue Reading
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New Mom Develops Guillan-Barre Syndrome After Difficult Labor
When Heather Hodsdon walked into Belmont Wheelworks in April 2010 to get her bicycle fixed, manager Gary Wood couldn’t help but laugh.… Continue Reading
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Lisa with Adrenal Cortex Carcinoma, “I Had to Fight for My Treatment Plan.”
I was 35 years old when I was diagnosed with Adrenal Cortex Carcinoma–stage IV, metastasized to the lungs. I was recently divorced, a… Continue Reading