Every May 20th is Behcet's Disease Awareness Day.
I was diagnosed with Behcet's Disease in 2013, about six years after my first flare. The diagnosis process can be a long and frustrating journey due to the fact that there is no formal blood test that can identify the rare disease. It effects men and women of all ages around the world, from the UK to the US, Asia, the Middle East and beyond. Over the years, many resources have become available, as well as forums that can aid others in learning more about this vasculitis disease which effects the inflammation of the blood vessels.
Let's start with: What is Behcet's Disease?
In 1937 the Turkish dermatologist Hulusi Behcet called attention to the association of oral and genital ulcerations with hypopyon-uveitis. Since then, Behcet’s Disease has become associated with a number of additional clinical manifestations, each attributed to an underlying vasculitis. Vessels of all sizes may be affected. The most typical clinical lesions are mucocutaneous, reflecting involvement of small vessels, but inflammation of the aorta and its branches and veins of all calibers is also possible. The disease is recognized worldwide, but there are significant differences in the epidemiological, genetic and clinical characteristics of the disorder between ethnic groups and in different geographic locations. As there are no specific manifestations nor specific diagnostic tests, the term "Behcet’s Syndrome" is preferred by some authors, especially for patients from low-prevalence areas whose disease manifestations are generally less severe and possibly due to other underlying conditions. The disease is associated with significant morbidity and mortality. Treatment is dependent on the site and severity of manifestations.
What are the signs & symptoms?
Everyone experiences different symptoms and the disease does not discriminate. Common symptoms are: mouth/oral ulcers, genital ulcers, surface skin rashes and ulcers, joint pain in targeted areas, neurological issues, etc. Full list of symptoms here.
How is it diagnosed?
The diagnosis is based on the occurrence of signs and symptoms of the disease and on positive clinical criteria referred to as the International Clinical Criteria for Behcet's Disease.
Who and what treat Behcet's Disease?
Rheumatologists (doctors specializing in arthritis and other autoimmune and inflammatory disorders) are the most knowledgeable about the disease and should be the main physicians involved in the care and treatment of Behcet's Disease patients.
Over the years, a handful of medications have proven to help and minimize symptoms, including: COLCHICINE, OTEZLA, PREDNISONE, etc.
I highly recommend these resources:
American Behcet's Association - Join their Facebook page and follow info at https://www.behcets.com/
Rare Connect.org - An incredible forum of conversations with fellow #BehcetsWarrior patients at https://www.rareconnect.org/en