Thanks for taking the time to visit my JustGiving page.
The Fibrous Dysplasia Support Society exists to support people who have, or support someone (usually a child) with, the condition. It is very rare, I first met someone else with FD in my 50th year, with no more than a few hundred cases in the UK. It is often misdiagnosed as bone cancer as many doctors rarely see the condition. Without FDSSUK people can go through life never knowing how others deal with it and how strength comes from sharing and supporting. We are entirely self funded.
Your support this year is crucial: FDSSUK is hosting a visit by Dr Michael Collins, a world authority on the condition, and we need to fund his team's flights from USA and accommodation. He is joining us for FDSSUK's annual meeting in October 2015 to meet UK patients and carers, and pass some of his experience on to UK medics. This will make an enormous difference to anyone with FD in the UK.
A little about the condition: FD itself is a bone condition. It has other associated conditions that radically affect hormones and create large myxomas near FD lesions. The main effects are:
- skeletal weakness and disfigurement primarily in long bones and the skull. This causes many fractures, asymmetry in appearance, mobility issues, and growth restrictions
- it usually manifests itself in childhood; in girls this can mean precocious puberty often going into puberty before their second birthday.
- prominent 'café au lait' birthmarks.
I have FD, predominantly in my left hip and femur, which are held together by some clever titanium metalwork around an artificial hip. So I'm lucky, but I'll never run a marathon; I'll never run anywhere in fact, and any attempts to do so resemble a drunken dog on a see-saw before clattering to a halt a few yards later.
My challenge is to ride in this year's motorcycle 'National Road Rally' (www.nationalroadrally.co.uk). This involves a noon start on Saturday 4 July, followed by nearly 600 miles on public roads during which some 22 checkpoints need to be visited, finishing in time for breakfast on Sunday. Yes, that's through the night.... at a time when normal people are heading for their cosy beds, I'll be one of about 550 like-minded fools dodging bats, foxes, owls and drunks on England's highways and byways.
So this is my marathon; coercing over 300kg of 160hp motorcycle to go where I want for nearly 600 miles and not through the nearest hedge. Physically it is tough enough for me. Imagine being in a 70 (ish) mph wind while wrestling a fridge for 20 hours and you'll get the idea. Even more fun if it rains. Mentally it is just as hard. Concentrating on staying upright, within the speed limit (mostly), out of the hedge, and avoiding the wandering livestock while trying to find a checkpoint that may be two guys sat at a picnic table in a dark layby is a challenge. But..... it is a huge amount of fun too, especially if there's a good sunrise.
After 40+ years, maybe it would be sensible give up on bikes. But no; because for as long as I can ride, Fibrous Dysplasia has not beaten me.
So we need your help, to keep our little Society solvent and provide a meeting place and a bit of encouragement for the lonely people with this life altering condition.