Story
<p>Hi!</p>
<p>Thanks for coming to donate on my justgiving page. As you may be aware I was diagnosed with Polymyositis 3 years ago in May/June.</p>
<p>For those who know me you'll remember I was a fit and (hyper)active man. Unfortunately 3 years ago I became acutely unwell. At the time I lost 3 stone in muscle in 3 weeks. I was so weak I could hardly raise myself, I could not physically roll over in bed and even my muscles used for swallowing didn't work. I was diagnosed with a rare muscle wasting autoimmune disease called Polymyositis. For the next two and a half years my body continued to breakdown my muscles at about 10-30x the 'normal' rate muscle is turned over. To compound matters I have also got Interstitial Lung Disease (ILD) which basically means my lung tissue has been attacked and become scarred. This is a reasonably common complication of Polymyositis.</p>
<p>Polymyositis is a rare disease and research into its causes and looking for cures are poorly funded. As such little is known about the disease and it's management has been slow to change. </p>
<p>Thankfully after I was diagnosed I was put in touch with Professor Mike Hanna who works from the Queens Square Neurological Hospital in London. He carries out research into many neuromuscular disorders, of which Polymyositis is one. Through research I am pleased to say management of this and other similar diseases is changing, and more interventions are being found that help people whose immune system are attacking their muscles. It is with the help of his expert judgement and management that I have been able to recover to the level I am now.</p>
<p>I am very lucky. Since March last year I have been slowly improving since changing my regime as directed by Professor Hanna. I am still on daily medication without which I start to slip backwards but generally my disease is now under some semblance of control. I am back at work and got back into a swimming pool about 2-3 months ago. </p>
<p>I have regularly joked with Professor Hanna that I would join him in his annual fund raising run when he got me better. Well as of the end of April I felt good enough to try and run. I managed about 0.75km. My lungs burned thanks to the ILD, my whole body ached and I was knackered. It was at this point I decided I would run 10km in 5 weeks time!</p>
<p> So on 27th May 2012 I am coming to London, meeting with Prof Hanna outside our usual hospital appointments and running 10km. I can only think it is the hardest thing I will have ever done. That's coming from a guy who has run a marathon and swum the english channel as part of a relay! The only thing that will get me round is knowing that none of these things are as hard as climbing a flight of stairs or getting through a day just standing up when you have Polymyositis. </p>
<p>The money I raise will be split between the Comprehensive Centre for Neuromuscular Disease at Queens Square and The Myositis Support Group. The CCND, lead by Professor Hanna, develops research programmes to find treatments for neuromuscular diseases such as Motor Neurone Disease, Muscular Dystrophy, Myaesthenia Gravis and Polymyositis amongst others. The support group is the only charity supporting patients, and families of those with the debilitating Myositis diseases. They provide information, support and also help fund research into these diseases. I know personally how much this charity means to a small handful of men, women, and children who have what I have.</p>
<p>I hope you can spare some hard cash to help me raise funds for these worthwile causes.</p>
<p>Many Thanks</p>
<p>Bill</p>