Sore feet, muscle cramps, exhaustion and not forgetting the cracked nipples, over a 26.5 mile course for four hours, feels like torture. However it is nothing compared to what the sufferers I am running for have to face every day.
My sister was diagnosed with Juvenile Dermatomyositis in 1983, she was 6 years old and I was 4. It is a miserable disease, she was very weak, couldn't walk, play, swallow, talk or do any of the things we used to do together as kids. Her symptoms came on gradually and she initially spent many months in hospital undergoing tests, concoctions of medicines and physiotherapy regimens. She has got better but over the years has spent a lot of time in and out of hospital. There is no cure, but fortunately in most children the disease can eventually "burn itself out", this is where the muscle and skin inflammation resolves but many are left with mobility difficulties and constant fatigue as the muscles are damaged beyond repair.
Children are not the only ones affected, anyone of any age can be struck with this devastating autoimmune disease (Dermatomyosits/Polymyositis) where the muscles (and the muscle capillaries) are attacked by ones own immune system resulting in chronic inflammation and muscle damage. Inclusion Body Myositis is quite different from the other forms of myositis and is more common in older people in fact it is now thought to the most common muscle disease in people over the age of 50 years with features akin to being a degenerative disease.
The Myositis Support Group was initially set up as a parent contact group for Juvenile Dermatomyositis but rapidly accepted adults suffering with Dermatomyositis, Polymyositis and Inclusion Body Myositis. Despite being a small charity it has with the help of it's supporters raised money to fund many research projects across the UK in the hope to find a better diagnosis, prognosis, management, treatment and ultimately a cure. The work of the Charity was recognised in 2008 when founder Les Oakley (also my Dad) was awarded the MBE for Services to People with Myositis.
The Myositis Support Group has many future projects waiting in the wing for financial support and I hope my efforts in running this years London Marathon will go a small way in helping the understanding of these muscle diseases and improving the lives of those who suffer the daily weakness, fatigue, stiffness, and pain. At the end of the London Marathon myself and all the other runners will have quite a few things in common, as well a a sense of a achievement we will all briefly have muscle inflammation (and a raised Creatine Kinase level), thankfully ours will recover!
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Thank you
Dave
