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Patient Stories

A total of 362 posts are filed under Patient Stories
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#FightingForMaya
Maya. The most beautiful thing about her is her smile. It’s infectious and everyone in her “village” of caretakers wait for it to… Continue Reading
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Same But Different: Maddox’s Life with Hypophosphatasia
Photographer and head of the non-profit organization “Same But Different”, Ceridwen Hughes, recently met a boy named Maddox and his… Continue Reading
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My Boys and Masa Syndrome
In 2007 I gave birth to my first son. The labour was very long and he was not breathing. Eventually he was stabilised and a few days later… Continue Reading
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Jessica’s Journey with Hypokalemic Periodic Paralysis
  By Jessica Acton I have always heard your teenage years are the hardest. If I had only known how horrific they would soon become for me I… Continue Reading
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A Wife? A Mother? What Was Possible With a Diagnosis of Congenital Adrenal Hyperplasia?
I am a 37-year-old wife and mother of three handsome boys and I have a disease called Congenital Adrenal Hyperplasia (CAH) with salt… Continue Reading
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Twenty-Year-Old Thanks Benefactors for Treatment
20-year-old Peyton Sheppard from Chandler suffers from a rare blood vessel disease. It causes a blood circulation disorder with symptoms… Continue Reading
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Kentucky Girl with Rare Disease Makes Adorable Appearance on Rachael Ray
One Kentucky girl got the experience of a lifetime on Wednesday when she made a special appearance on celebrity chef Rachael Ray‘s… Continue Reading