Sent to Professor Snowdon
I apologise for the shortness of my e-mail yesterday, 2 of the secondary symptoms of CRPS are short term memory loss and the inability to concentrate/focus for very long. I was in the middle of doing something when my wife pointed out the TV broadcast and didn’t want to have forgotten about it by the time I finished. Please understand that another symptom is for the wrong word to come out so some of my sentences my not make sense even though I will go through it 3 times before sending it to you.
Complex Regional Pain Syndrome is recognised as the World’s Most Painful Incurable condition. According to US Surveys sufferers are 900% more likely to commit suicide than any other group in the World and in the long term 25% of us do. 66% of us will never work again and it will spread in 77% of cases. It is the only condition which can start from something as trivial as a twisted ankle or sprained wrist, there is even one confirmed case of it starting from a bee sting and go full body, all 4 limbs, torso, neck, scalp, eyes, mouth and internal organs. It does this in 10% of cases. In 7 – 8 % of cases we get wounds that may never heal, I am sure you can realise just how dangerous that could be for us. Yet 95% of the Medical Profession have never even heard of the condition.
Since the start of modern clinical trials there have been 46301 studies into cancer 5358 into MS, the number for CRPS is 94. According to official figures from the DoH nothing was spent on CRPS between 2008 and 2011, £250,000 was spent in 2012 and I know from |Mr Lamb the figure for 2013 was £650,000.
The condition is caused by a trauma which causes scrambling of the pain centre of the brain so that it doesn’t recognise that the trauma is over and keeps firing abnormally high pain signals through the nervous system at first to the location of the original trauma but any further traumas even the slightest can cause the condition to spread from the original site or start at the site of the new trauma, my first spread was caused by a specialist touching my arm 4ins outside the affected area, it caused the CRPS to spread from my hand upto my elbow, another slight trauma caused it to start in both legs.
There has been no research in the UK into a cure for CRPS, only ways for sufferers to reduce the pain, The current research into Immugloblin according to figures given me by the NIHR indicate that it will not be finally completed until 2034, many of us won’t be alive by then and as I stated i is not a cure.
I read through your paper yesterday not easy as I had to keep taking breaks and with no medical training I did not understand everything but having done well over 3000 hrs research into CRPS I believe stem cell treatment has the best chance of curing or at least giving us long term remission than anything else I have come across.
I have been asked to brief MP’s and The press on CRPS either towards the end of this month or early next, if you think that your treatment would help us in any way I would ask you to find the time to come along speak about it and help us getting funding for an initial trial on one full body sufferer and more funds if it is successful.
K A Scardifield