Behcet's á Íslandi is an organization of Icelandic Behcet's patients. Behcet's is a rare and incurable autoimmune and arthritis disease, diagnosed on average among one out of 100.000 people in the western hemisphere. Behcet's is more common between Turkey, Iran and Eastern Asia. The disease has only recently been diagnosed among westerners, making proper diagnosis difficult for patients. A correct diagnosis usually takes between five and fifteen years.
Behcet's is a vasculitis disease showing different symptoms for differentpatients. However, the frame of diagnosis includes repeated, long term and painful mouth ulcers (at least three times a year) and two of following symptoms: Repeated ulcers in the genital area, swollen eyes or in swelling in the veins leading to them. Skin rash/spots (usually confirmed through skin test or biopsy). Behcet's is incurable but symptoms are treated with medication giving variable results.
The Behcet's Iceland Organization was founded in August 2017 with the intension of forming a community and support for diagnosed patients in Iceland. This includes educating families and supporters of patients, health care professionals and the general public, and creating connections with overseas Behcet's organizations. Most Behcet's patients are at any given time unable to work and suffer from constant symptoms. This is why the organization puts huge emphasis on education on the lives of those suffering from chronic and often invisible illnesses and following disability.
Behcet's is an extremely rare disease and as such it has been researched only to a limited degree. This creates an insecurity and fear of the unknown amongst patients, as it makes it hard for them to know if the disease will cripple their lives or ever be curable.
Behcet's often called a chameleon disease, as it copies symptoms of other diseases. The inflamed veins cause symptoms similar from other diseases. Behcet's patients usually deal with the same symptoms as patients suffering from MS, Crohns, Lupus, vascular and joint arthritis.
Chairperson of the Behcets Iceland Organization, Bára Halldórsdóttir runs a Facebook page, Snapchat, Instagram and a Youtube channel, giving an insider look into the daily life of a disabled chronic Behcet's patient. Through these media channels she also publishes articles and other means of education regarding the disease.
Behcet's á Íslandi