My son was diagnosed with Behcets in 2012 after suffering with the disease without being aware.
Behcets is a rare, chronic, lifelong disorder and comes in many forms. It is only thought to affect less than 1000 people in the UK. Because of the rarity of the disease there is no government funding available for research, and without the research there is little hope for a cure for this dreadful disease.
My son is one of 2 people in the UK which has Behcets/Hughes Stovin, an extremely severe form of the disease. He suffered with this for many years without knowing as most GP's have never dealt with a patient with Behcets, so don't recognise the symptoms. Even the first hospital he was admitted to failed to make a diagnosis, even after 4 months. It wasn't until he nearly died of an aneurism and was admitted to intensive care at a different hospital that they finally made the diagnosis. The disease may have been controlled with medication and may not have become so severe if a diagnosis was made sooner.
3 years on and he is still suffering. He is on injections and 6 tablets a day to suppress his immune system since this is attacking his veins and arteries. He has aneurisms both in his body and on the brain which could cause him to bleed to death if the medication fails. Due to the rarity of this there is limited medication available. He has exhausted all the medication available and is on the final drugs available. If this fails to work then the disease will kill him. It affects my son and the whole family daily, it has changed our lives massively and life will never be the same again.
I am trying to raise funds to raise awareness, pay for further research and enable a wider variety of medication to become available. If the awareness was greater then people could get diagnosed sooner, this would mean that it would be under control without it getting so severe, saving many people from the massive suffering that we have had to go through which is continuing.
I appreciate any donation, however small, as it will all go to a worthy cause.
Thanks for your support :)
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