Thank you so much for helping us to beat Behcet's Disease! We hope you had fun with the 'Get Set Behcet's' tennis challenge, each video posted and each shout of 'Get Set Behcet's' is raising awareness of this rare disease so from me to you a huge THANK YOU! Please keep spreading the word by nominating your friends to take up the challenge. Most importantly your donation will be going straight to the Behcet's Syndrome Society, of which I am a member and Trustee, and I can assure you that every penny donated will help fund vital research, raise awareness, and support patients and their families living with this disease.
Some of you may never have heard of Behcet's Disease ... so what is Behcet's Disease?
- The immune system attacks our blood vessels causing severe inflammation throughout our body
- It is a multi-system disease which can affect our skin, eyes, joints, bowel, blood vessels, brain, and other major organs
- It is rare with around 1000 people affected in the UK
- It is incurable
- It can take a long time to gain a diagnosis
So we have Behcet's Disease but what does that actually mean for patients?
- You look well, fine, healthy, when you feel anything but ... we live with an invisible disease
- You depend on medication to keep you well
- Your symptoms can cause you a lot of pain
- Sometimes you can't work for short, long or indefinite periods of time
- You have to live with a disease that is unpredictable - the symptoms can attack at any time and for no known reason
- Sometimes you struggle to get out of bed, to eat, to talk, to walk, to sleep
- You have to rely on your husband, wife, mother, father, or children to be your carer when your disease attacks
- You feel alone, isolated, and misunderstood
Behcet's disease can be difficult to diagnose, manage, and treat but there is always the chance, and hope, that a medication will work for you and lead you on the road to recovery. Your donation will help fund vital research into targeted therapies so that more people can find their way back from Behcet's.
This is my story ... please do take the time to read it, thank you :-)