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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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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Our journey

Guest Article: Alternating Hemiplegia of Childhood For Rare Disease Day (28-Feb-2017), I have invited a family friend to write about her experiences of AHC, a… Continue reading Our journey

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United States

It started with CRPS complex regional pain syndrome and due to systemic complications I now have 8 different rare diseases and now waiting for #9… Continue reading United States

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My daughter Kennedy was born with Arthrogryposis. It is contractures of the limbs. She has clubfoot, hyperextended knee and dislocated hip. She has already had… Continue reading Arthrogryposis

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