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oh now IC it…

From being a young kid, i always knew i was weird. I always seemed to be sick, and my parents were beside themselves. Urinary tract… Continue reading oh now IC it…

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diagnosis. not normal.

duh! – of course I’m not normal. And ya know what, I am ok with that! As a child, I didn’t know I was different… Continue reading diagnosis. not normal.

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metastatic fibrosarcoma and desmoid tumors

It started in 1981, when I was fourteen. I went to the orthodontist and he placed four spacers on my molars. They dug deeply into… Continue reading metastatic fibrosarcoma and desmoid tumors

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If Only it Were a Nightmare

” Sometimes I see 2 of Daddy “, Maggie said at the age of 9. 3 days later we were told she had 6-12 mths.… Continue reading If Only it Were a Nightmare

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Desmoid tumor

I was diagnosed with Desmoid in 2012, a rare fibrous tumor. It is inoperable as per experts. Started on oral chemo for an year with… Continue reading Desmoid tumor

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searching for a match

my daughter Clara destiny was diagnosed at the age of eight with a rare chromosome disorder 18p12q. I had no idea she had one until… Continue reading searching for a match

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Different

I have Myotonic Dystrophy. Discovered at age 29 when I had cataract surgery. Something very odd for a 29 year old. It causes muscle weakness,… Continue reading Different

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The Long Road – My Diagnosis Story

One month ago today I received the call. I immediately took note of the time 5:32pm, noticing it odd for a doctor’s office to call… Continue reading The Long Road – My Diagnosis Story

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The purple monster

My name is Amanda Boston and I am 27 years old. When I was 24 I started having abdominal pain and a rash on my… Continue reading The purple monster

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