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Patient Stories

A total of 96 posts are filed under Patient Stories
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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
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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
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Kickin’ Fightin’ and Strong: Klippel-Feil Syndrome and Me
I was diagnosed with Klippel-Feil Syndrome (KFS) shortly before my first birthday. At birth I had the ‘classic’ triad of… Continue Reading
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Kallmann Syndrome Causes Absent Puberty
Kallmann syndrome is a rare genetic hormonal condition. Its primary symptom is a failure to start or fully complete puberty, it is also… Continue Reading

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