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Life with Hereditary Angioedema Type 3

 Hi, my name is Jill and I’m a 33-year-old California raised, self-proclaimed mega nerd. I was diagnosed with the Rare Disease Hereditary Angioedema Type 3… Continue reading Life with Hereditary Angioedema Type 3

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Mowat-Wilson Syndrome

Hi my name is Brady, I am 11 years old and I was born with Mowat-Wislon Syndrome.  I have my mom do the talking for… Continue reading Mowat-Wilson Syndrome

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Puberty? I’ve never heard about it. My life with Kallman syndrome.

I used to be a wierd boy with a wierd appearance: I was (and I still am) fat and loop-eared. Other boys didn’t invite me to their… Continue reading Puberty? I’ve never heard about it. My life with Kallman syndrome.

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Walking with Lems: My story with a rare autoimmune condition

There is many simplicities in life in which we take for granted everyday, simplicities that happen to the body naturally that we never think of.… Continue reading Walking with Lems: My story with a rare autoimmune condition

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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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