Story
At the age of 4 years old, I was diagnosed with Behcet's disease.
Behcet's is an auto-inflammatory condition affecting the blood vessels (known as vasculitis).
Behcet's disease presents with annoying everyday symptoms like mucocutaneous ulcers, which are painful, but Behcet's can progress. It can cause inflammation inside the eye, inside the joints like knees, ankles and wrists, inside the bowels and inflammation in the veins as well as causing skin lesions. In rare cases there is inflammation of the brain tissue and involvement of the central nervous system called neuro-Behcet's.
Classically Behcet's disease causes flares, so patients may be fine one day, then struggling with pain and ulcers and fatigue the next day... which can be pretty confusing for us and those around us! We still do not know the cause, the triggers nor the cure but we hope they will soon be discovered!
I am looked after by Professor Fortune and her team of experts at the London Behcet's Centre of Excellence. We get to see lots of doctors all in one visit to the Royal London Hospital; Oral Medicine and Immunology, eye doctors (Ophthalmology), joint experts (Rheumatology), bowel doctors (Gastroenterology) and a specialist who cares about your thoughts and feelings and coping with the disease (Psychology). There is even a Behcet's disease support worker who can help your school and family to understand your medical condition and think about accessing extra help for patients. They are linked to a team researching Behcet's disease, looking at genetics and sharing knowledge around the world.
Behcet's UK is the charity set up to care for patients affected by this rare condition. They help raise awareness of Behcet's disease, support patients by bringing them together in local group meetings and online, and contribute to research into the current cases and the best treatments for Behcet's disease.
Please support me as I cycle the 226 mile distance between the 3 Behcet's Centres of Excellence; London - Birmingham - Liverpool.
Thank you!
Zoe (and mummy Laura ) x