Sarcoidosis may be unknown but it is not rare. Sarcoidosis is not a new disease but new diagnostic techniques and technologies (such as CT scans) have enabled improved detection. More than 1 in 10,000 people get the illness (annually) and while uncommon it can be fatal. Recent studies suggest that the overall lifetime risk of getting Sarcoidosis could be as high as 2% or more. These studies also confirm African-Americans (especially African-American women) are three or four times more susceptible to the disease, which could put their lifetime risk over 5%. These disease rates are clearly outside the range of being ‘rare’.
The limited awareness of Sarcoidosis has had major consequences leading to significant shortfalls in medical research funding. Definitive diagnostic tests and determination of cause remain elusive. Current medications may provide relief but most have the risk of significant side effects. There is no known cure.
Ways to increase awareness are being sought, if you have any suggestions please let me know.
Amyl Ahola, Founder