Thanks for taking the time to visit my JustGiving page.
I'm raising money for the Behcet's Syndrome Society.
Behcet's Disease is a rare, chronic, lifelong disorder that involves inflammation of blood vessels throughout the body. It is a multi-system disease, involving all organs and affecting the central nervous system. Symptoms include recurrent oral and genital ulcers, eye inflammation, all types of skin lesions, arthritis, bowel inflammation, meningitis, blindness, stroke, swelling of the spinal cord and overwhelming fatigue. There is currently no cure. Behcet's Disease tends to come and go in a series of 'flare ups'. Although it does not burn itself out the symptoms and flare-ups can become less aggressive and less regular.
Patients are usually diagnosed in their 20s or 30s but it is known to affect all age groups. Although it is incurable, it can be treated. Treatment is aimed at suppressing the immune system to reduce the extra inflammation, which suppresses the symptoms.
There is no diagnostic test for Behcet's Disease; a diagnosis is based on the symptoms you present. GPs are often the first port of call but most have never dealt with a patient with Behcet's Disease before and symptoms are often linked to the Herpes Simplex Virus. The sufferer doesn't always look ill, despite having debilitating symptoms. Functioning on a day-to-day basis can become extremely difficult. Sufferers are often unable to work. Relationships are put under considerable strain. Friends are 'rainchecked' for a time when you feel well enough. Partners become your carer.
The number of Behcet's patients in the UK is unknown, but it is estimated at about 1 in 60,000. Basically, 1000 people in the UK. I'm one of them.
I was diagnosed with Behcet's Disease when I was 22. I'm not going to delve into all the details but for a good few years I went through a really rough time. I was unable to work. None of the medications had any impact or gave me hideous side effects. I was eventually put on thalidomide as a last resort and although it alleviated some of the symptoms, I wasn't 100% well when taking it. However, I believed that I was capable of returning to Uni to train as a Children's Nurse. When I told Georgina at the society what I was planning to do she thought I was nuts but supported my decision. So did my consultant, specialist nurse, husband, family and friends. After being transferred to the Cardiff NHS trust it was decided that thalidomide was not the best medication for me and that I should try a new radical drug. It has been an absolute gem. Every 8 weeks I take myself off to hospital, attempt to get comfortable in one of those NHS reclinable chairs, and have a drug, Infliximab, infused into my bloodstream while I read a book or catch up on some much needed sleep. I've been told it has a limited lifespan and will eventually stop working but, for now, it works, and it works really well. And I'm 6 months away from qualifying, with hardly any sick days to report!
This is the first time I have selected to raise money for a charity so personal to me. Over the next few weeks I will be taking part in two 10Ks and the Cardiff Half-Marathon to raise money for the Behcet's Syndrome Society. Their main aim is to find a cure. In the meantime they provide the best possible care for all Behcet's patients, whether diagnosed or undiagnosed. They help to obtain quick diagnoses, referrals to specialist consultants, support drug regimens, offer advice on benefits, and ensure that the medical world is aware of Behcet's Disease.
So please dig deep and donate now.
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Thank you for your support.
See you at the finish line in 9 weeks time!
Rach.xx
