Behçet’s Syndrome Society

Caring for those with a rare complex and lifelong disease

The Behçet's Syndrome Society has been established as a charity for over 25 years and represents Behçet's disease patients and their carers in the UK. Equally importantly, we exist for those not yet diagnosed with Behçet's disease and those who think they may have Behçet's disease. Behçet's syndrome is a rare disease. The terms Behçet's disease and Behçet's syndrome are used interchangeably on this website and refer to the same condition. Rare diseases are often misunderstood and are the orphans of the NHS; this is perhaps understandable given that GPs may never see a patient with Behçet's disease in their working life. However, for the undiagnosed Behçet's disease patient, this can prove to be a very difficult time.

What is Behçet's disease?

Behçet's disease is a rare, chronic, lifelong disorder that involves inflammation of blood vessels throughout the body. Symptoms of Behçet's disease include recurrent oral and genital ulcers, and eye inflammation. The disorder may also cause various types of skin lesions, arthritis, bowel inflammation, and meningitis (inflammation of the membranes of the brain and spinal cord). Behçet's disease generally begins when patients are in their 20s or 30s, although all age groups may be affected. Behçet's is a multisystem disease; it may involve all organs and affect the central nervous system, causing memory loss and impaired speech, balance and movement. The effects of the disease may include blindness, stroke, swelling of the spinal cord, and intestinal complications.

Although Behçet's disease is incurable at present, incurable does not mean untreatable. There are several ways in which the immune system can be suppressed to an appropriate level to reduce the extra inflammation, and this suppresses the symptoms.

Behçet's disease tends to come and go in a series of attacks (‘flare-ups') throughout life. The disease does not ‘burn itself out', but sometimes it can level off and the flare-ups become less aggressive and happen less frequently. However, for those diagnosed at a young age, life expectancy can be reduced. More

Online donations

We now have a secure online donations facility for those who wish to donate directly to the Society. More

Forum

Visit our new Forum at http://behcetsuk.healthunlocked.com/.