Supporting Behçet’s UK

This year, in addition to Honeypot, we are supporting Behçet’s UK.

From their website:

Behçet’s Syndrome (also known as Behçet’s Disease or, simply, Behçet’s) is a chronic condition resulting from disturbances in the body’s immune system.

This system, which normally protects the body against infections by producing controlled inflammation, becomes over-active and results in unpredictable outbreaks of unwanted and exaggerated inflammation. This extra inflammation particularly affects blood vessels of all sizes, including arteries and veins. As a result, symptoms occur wherever there is a patch of inflammation; this can be anywhere where there is a blood supply – from the brain down to the feet.

No-one knows why the immune system starts to behave this way in Behçet’s. It is not because of any known infections, it is not necessarily hereditary, but can sometimes run in families, and it is not thought to be related to lifestyle, age, or where someone has lived or where they have been on holiday. It is not associated with cancer, but is found more frequently in people with certain tissue-type molecules and genes, also the potential link with this is not understood. It does not follow the usual pattern for autoimmune diseases and is better considered, for now, as a disease of inflamed blood vessels (vasculitis) – a vasculitic disease.

Although Behçet’s 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.

Most of the symptoms are painful but not life-threatening. However, when the disease affects major parts of the body, such as the eyes or brain, it can cause serious consequences including blindness or strokes – but this is fortunately rare. Behçet’s symptoms typically come and go in a series of attacks (flare-ups) throughout life. The disease can often, but not always, become less severe with increasing age, where flare-ups become less aggressive and happen less frequently. Most people with Behçet’s have a normal lifespan and, with appropriate medical help, can hope to lead close-to-normal daily lives.

No-one knows for sure how many people with Behçet’s there are in the UK, but it is estimated that there are about 1 in 100,000 – that is, about 1000 people affected. It much more common in the Middle East and Asia. Because it is more prevalent in the areas surrounding the old silk trading routes, it is sometimes known as the ‘Silk Route’ disease. As yet, it is not known what triggers this disease.

There are three Centres of Excellence in the UK, in London, Birmingham and Liverpool. These provide diagnostic services and treatment as well as vital research into Behçet’s.

The artist responsible for the revamped Duggley, Linda Jones, was diagnosed with Behçet’s in 2016. However, living in Wales and due to the separation between NHS England and NHS Wales, she had and still has no access to these centres. However, with more funding, more centres might open outside of England within Scotland, Ireland and Wales allowing all sufferers of this rare disease within the UK to receive the support they need. In addition, better funding can lead to research in understanding Behçet’s and assisting doctors in general to recognise much earlier the symptoms.