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Rare Disease on Vacation

My story started while I was vacationing in Thailand, visiting my friend Peter.   I was 26 years old and it was my first trip all… Continue reading Rare Disease on Vacation

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ICP – extreme itchiness is not always normal during pregnancy.

I was one of the lucky women who was diagnosed with ICP with our third and fourth pregnancy. I had horrible itching that wouldn’t stop,… Continue reading ICP – extreme itchiness is not always normal during pregnancy.

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My Dad…gone too soon, too fast

My Dad, Johnny Cain, affectionately known as “Big Boss” was diagnosed with a rare neurological disease called Creutzfeldt-Jakob Disease on September 1, 2016. December 8th, three months… Continue reading My Dad…gone too soon, too fast

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The trip that changed everything

Sibylle’s Story My story started while I was vacationing in Thailand. I was 26 years old and it was my first trip all alone. Peter,… Continue reading The trip that changed everything

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HELPSAFIA.COM

Safia is 14 years old and in 2016 she started to have a lot of health problems: unexpected, frequently and constant bleeding, severe abdominal pain,… Continue reading HELPSAFIA.COM

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Its ok to be rare

I was diegnosed pretty quickly with vasculitis, and then Lupus also about a year later. My mum has Vasculitis and scleroderma so when i started… Continue reading Its ok to be rare

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Mortar that never dries – EDS-h

Imagine a brick building built with mortar that never dries. Walls move, buckle, and eventually collapse. Now imagine a complex human body with a similar… Continue reading Mortar that never dries – EDS-h

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Why I Fight

My name is Reanna and I have Chiari Malformation, Hypermobile Ehlers-Danlos Syndrome, Dysautonomia and a few other comorbities.  It has been a challenge finding doctors… Continue reading Why I Fight

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Lafora children

From the book “TACI”, by the author Snjezana Gajic, mother of a girl named Tatjana, who lost her battle of life against the Lafora disease.… Continue reading Lafora children

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