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Living with Tuberous Sclerosis.

My wonderful daughter, a talented artist, photographer, was born with TS. Her life as a child was not easy, she was bullied at school, has… Continue reading Living with Tuberous Sclerosis.

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G.A.N.s

My 6 year old daughter Josephine has Giant Axonal Neuropathy , the only case in australia and there are only 43 to 44 cases around… Continue reading G.A.N.s

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My beautiful children

My beautiful son was born with multiple hereditary extososes. His sister was his guiding light and supporter through his young life of surgery. Her crushing… Continue reading My beautiful children

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Misdiagnosed as hypochondriac!

Hi there, my name is Dee and I live in Somerset, UK. For as far back as I can remember I have been ill in… Continue reading Misdiagnosed as hypochondriac!

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My Intrahepatic Cholestasis of Pregnancy (ICP) Story

When the word “Pregnant” showed up on my ClearBlue pregnancy test one afternoon in January, I just about flipped my lid. We hadn’t planned for… Continue reading My Intrahepatic Cholestasis of Pregnancy (ICP) Story

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Living with Cushing’s Syndrome

Hello, My name is Maria, I am 32 years old , I have Cushing’s Syndrome and this is my story. I am from Bogota, Colombia,… Continue reading Living with Cushing’s Syndrome

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Years of Misdiagnosis Compels Me to Advocate for Rare Disease Patients & Awareness

Hello! My name is Kimberly and I was diagnosed with GIST Sarcoma (gastrointestinal stromal tumor) in December of 2012 and Papillary Thyroid Carcinoma with a… Continue reading Years of Misdiagnosis Compels Me to Advocate for Rare Disease Patients & Awareness

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Littoral Cell Angioma

My story is not about a disease with suffering and pain like so many I found on this site. My story is about living with… Continue reading Littoral Cell Angioma

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TARLOV CYST/TETHERED CORD

I WAS BORN WITH TETHERED CORD AND WAS NEVER DIAGNOSED, TARLOV CYST IS PRESENT OR FOLLOWERS THIS DIEASE FOR SOME REASON. MINE STARTED WITH BOWEL… Continue reading TARLOV CYST/TETHERED CORD

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