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WHY DON'T YOU TELL US YOUR STORY?
Share your photos, videos and your experiences! Be part of Rare Disease Day by informing others and raising awareness—sending a message of solidarity and community.

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Lucy - Afghanistan
My name is Lucy , I'm 13 and when I was 9 I was diagnosed with Klippel Trenaunay Weber Syndrome and Hemihyperplasia , this means my lymphatic system , bones and vains were not formed correctly and also one side of my body grows at a faster rate than the other , I have a port wine stain which is a birthmark all over my body I get laser surgery on and I also have metal plates in my knees to help me ...
Marie - United States
One thing I can vividly remember through the brain fog is looking at my legs in the mirror before my first surgery. I was born with Multiple Hereditary Exostoses. MHE is a rare genetic bone disease characterized by pain, growth deformities, and benign bone tumors that do have the chance of becoming malignant-my case of MHE is even rarer as I am the first in my family to have it. I stared at the go...
Margaret - Australia
In 2014 I saw a Doctor with a small lump on the side of my neck, had an ultrasound. She rang and said I had an inflamed parotid gland and to take pain killers. Over the next couple days the lump swelled more and I rang her and her reply was to take pain killers. Three days later I rang her again as the lump was now 5 x 5 x 3cm deep making it hard to open my mouth. Again she said to just take p...
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