Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
To the average person, Suryaa looks normal and is very intelligent and active. However, most of the time he lives in pain from recurrent mouth ulcers. When Suryaa was about three months of age, it was discovered that he had ulcers/lesions and inflamed lining on the [...]
My name is Aleena and at the age of 16 (I am 20 now) I was diagnosed with Behcet’s Disease, a rare autoimmune disease. Behçet’s disease (BEH-chets), sometimes called Behçet’s syndrome, Morbus Behçet, or Silk Road disease causes chronic inflammation in blood vessels throughout your [...]
My name is Sandy McElgunn. I am the President of the American Behcet’s Disease Association (ABDA) and a Behcet’s Disease patient. I have had Behcet’s Disease since I was a very small girl, but went misdiagnosed until my doctor finally diagnosed me correctly years later. [...]
