What is it?
Behçet syndrome is a serious long-term condition in which the blood vessels (arteries and veins) are swollen (inflamed) all through the body.
More than half of people with Behçet have inflammation in the eye (uveitis). About 2 in 10 people with Behçet develop permanent sight loss.
We don’t know the exact cause of Behçet syndrome, but is classed as an ‘autoimmune’ disorder. This means that the body’s own defence system for fighting infection turns on its own body.
The risk of getting Behçet syndrome may be increased by the combination of having certain genes together with environmental triggers such infection with a particular virus.
Behçet syndrome is rare in the UK. It is more common in people from Turkey, Iran, Iraq, Japan and Korea.
Eye symptoms can include blurred vision, pain and redness. If there is inflammation at the front of the eye (anterior uveitis) symptoms will include painful, red eyes and being less able to see clearly (poor visual acuity).
Inflammation at the back of the eye (posterior uveitis) doesn’t hurt but visual acuity gets worse and you may see ‘floaters’ across the field of view.
In rare cases Behçet can affect the specialised cable that sends visual signals from the eye to the brain (the optic nerve). This can be sudden, with symptoms including poor colour vision, visual acuity or a black spot in the middle of the field of view (central scotoma). But visual loss usually happens slowly if the optic nerve is involved.
Symptoms also affect other parts of the body including the mouth, heart, lungs, bowel, brain, joints and skin.
At the moment, the aim of treatment for Behçet syndrome is to reduce discomfort and prevent serious complications. There is currently no cure for Behçet's.
Medications such as corticosteroids can be given to help suppress the immune system and reduce inflammation.
Behçet syndrome is a very serious, sight-threatening condition with no current cure. It can sometimes cause death. So it is vital that we understand much more about the exact cause or causes.
We need to know which genetic backgrounds and environmental factors are important and how they cause disease. This would mean we have a target for developing treatment that could prevent sight loss and save lives.
You could play an important part in eye research by being a participant in clinical research study that may benefit many people. You could even help shape clinical research by becoming more actively involved and having a say. Patients, carer, or anyone with an interest can help.
What are clinical trials
Clinical trials are research studies that find out if a medical strategy, treatment, or device is safe and effective for humans. They are a key research tool for improving medical knowledge and patient care. The people who carry out research are mostly the same doctors and healthcare professionals who treat people. Their aim is to find better ways of treating patients and keeping people healthy.
Here are some ways to find out about research projects and clinical trials that you can get involved in.
UK Clinical Trials Gateway
The UK Clinical Trials Gateway run by the National Institute for Health Research (NIHR) provides easy to understand information about clinical research trials running in the UK, and gives to a large range of information about these trials. It is designed to enable patients and clinicians to locate and contact trials of interest. Visit their website and select the eye condition that you are interested in.
NIHR Clinical Research Network Portfolio
The NIHR Clinical Research Network Portfolio is a database of high-quality clinical research studies in England, Northern Ireland, Scotland and Wales. Within this the Ophthalmology Specialty Group supports a national portfolio of research studies in ophthalmology and the vision sciences. See their website for details.
If you wish to join a trial it is always best to discuss this with your doctor or clinical team first.
Last updated September 2015,
Approved by Prof Miles Stanford, King’s College London