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The Time I Never got Better

It was the first week in November of 2014, a fantastic event had just taken place, as my capoeira Mestre, just returned from a year… Continue reading The Time I Never got Better

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Scleroderma

At the age of one I was diagnosed with scleroderma and as I’ve grown older I’ve been diagnosed with many other diseases due to my… Continue reading Scleroderma

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Scleroderma

At the age of one I was diagnosed with scleroderma and as I’ve grown older I’ve been diagnosed with many other diseases due to my… Continue reading Scleroderma

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Thea Marie

In 2015, our granddaughter, Thea Marie was born. She was perfect, beautiful, and such a happy baby. We had no idea beneath the beautiful exterior,… Continue reading Thea Marie

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Dealing with adult Cyclical Vomiting Syndrome

My 28 year old son was first diagnosed with this rare affliction about 7 years ago. The name, and the acronym, is a bit unfortunate-… Continue reading Dealing with adult Cyclical Vomiting Syndrome

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Free Spirit

I tell you my story life . My name is Elena Pomana from Romania. I’m 27 years old and I’m suffering from a rare disease… Continue reading Free Spirit

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A Blessing – A Struggle; Living with Tetrasomy 18 P

At the ripe old age of fifty, the “shock” of learning you are having a baby pales in comparison to the moment when the doctor… Continue reading A Blessing – A Struggle; Living with Tetrasomy 18 P

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My Angry Rant for Rare Disease Day / Autoimmune Disease Month

http://whatyourdonotknowbecauseyouarenotme.blogspot.com/2016/03/my-angry-rant-for-rare-disease-day.html February 29, 2016 iwa Rare Disease Day. I think, I hope, it’s just a coincidence that it’s leap day. But maybe that’s more appropriate… Continue reading My Angry Rant for Rare Disease Day / Autoimmune Disease Month

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A Rae f Hope

Being the only patient in America with my (as of now) nameless and extremely rare disease, I can only hope that one day they name… Continue reading A Rae f Hope

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