Thanks for taking the time to visit my JustGiving page.

 

I am fundraising for Behcets Disease, its a rare vasculitis autoimmune disease that effects any where with blood vessels therefore this sadly means the whole body. 

It is a very difficult and debilitating disease to live with. Due to its rarerity there is little or no research into the condition, and those with it really rely on your donations to help! nine times out of ten sufferers are borrowing treatments licenced for other conditions such as Chemotherapy for cancer, drugs for MS and Lupis, whilst being on longterm steroids which causes its own set of issues. The issue with this is that the treatment isnt specifically for Behcets, the odd lucky patient will have a couple of months remission, other patients class themselves as lucky if their symptoms are slightly easier to cope with for a week or so. 

The behcets charity- The behcets syndrome society is dedicated to helping those suffering from this disease, medical research, setting up centres of excellence and helping their children and family members adjust. 

Some of the symptoms of Behcets if not treated in time or correctly can actually be dangerous and deadly, there is little known about this rare disease. 

 

I was diagnosed late 2012 with it and I am still struggling to adjust myself, my 9 year old daughter is currently undergoing tests and has a prelimery diagnosis of Behcets, which for me is terrifying as I dont want her to go through what I am going through, and I am one fo the lucky ones. At the moment her symptoms are sporadic and intermittent like mine where until last year. I am now dedicated to raising money for the charity and helping raise behcets awareness and hopefully when my daughter reaches my ages, there may actually be a successful treatment licensed for Behcets and on the Market. 

I have been on Azathioprine since nov 2012 now, a mild chemo type drug, having regular blood tests as it can also cause luekimia as a side effect! (oh joy) as well as causing damage to platelets and so on. Luckily so far I dont seem to be having side effects, but I also dont seem to be having good effects lol. Its literally prevented me from continuing with my business, and I can no longer kneel on the floor and play with my two yr old, for about 5 months i couldnt even pick him up, I have three children altogether, my prev mentioned daughter and my two sons, William (8) and Anthony (2), I miss being able to roll about with them and have races down the slides, but hopefully the azathioprine will kick in and help with that, I was at the begining of my teaching degree (cert ed) when I got really bad, and I am currently just about holding onto that, im determined that its not going to interfere too much with my future plans. 

I am under the centre of excellence at Aintree Liverpool. My daughter is under the centre at Alder hey. 

Every penny helps and really does make a difference. 

Thank you so much for visiting our page and we really are greatful for your donations to the society. 

Thanks Again! 

 

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