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PKU

Hi. My name is Kelly and I have phenylketonuria or PKU which is a rare disease. PKU is a genetic disorder that restricts me from… Continue reading PKU

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Allexis Siebrecht

LIFE WITH A RARE DISEASE My name is Allexis Siebrecht. I was born on October 14th, 2003 with a RARE liver disease called biliary atresia… Continue reading Allexis Siebrecht

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I fought Aplastic Anemia and won!

On October 30, 2013 I was diagnosed with Severe Aplastic Anemia, a rare disease in which there is a total failure of the bone marrow.… Continue reading I fought Aplastic Anemia and won!

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Inter cranial hypertension

My name is David. At the age of 21 I was diagnosed with IH, with papillary edema. Had to be flown to a hospital 250… Continue reading Inter cranial hypertension

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Living with Hemicrania continua

I have a condition known as Hemicrania continua, quite literally “continuous half-head pain”. My right side is affected, where I suffer a permanent background headache… Continue reading Living with Hemicrania continua

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Hystiocytosis

Diagnosed with Rosai Dorfman 11/2014. Ups and downs but fighting on.

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I have Addisons disease

I almost died before someone connected my symptoms to JFK, now 20 or so years later I have done what they said I shouldn’t and… Continue reading I have Addisons disease

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long journey into sleep

You are not alone. You are not worthless. That is my reminder to my fellow humans with rare diseases. I’m a 40 year old woman… Continue reading long journey into sleep

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Jenna’s Journey

Our daughter Jenna, now 19, is a survivor of Childhood Cancer and is legally blind. She is one of only about 400 people in the… Continue reading Jenna’s Journey

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