The story was about a disease that I had never heard of before, and one girl’s battle with its debilitating affect on her body. The girl, Lindsay Clarke, is from Talywain in South East Wales and she suffers from Stiff Person Syndrome. Lindsay has suffered from SPS since June 6, 2009, and hasn’t left the upstairs floor of the house she shares with her husband Jason and her three children, since December last year.
Due to the disease she experiences excruciatingly painful spasms which cause her body to stiffen and become frozen like a statue. The seizures and cramps can last for anything from half an hour to six hours and occur with frightening regularity.
The disease is thought to affect about one person in every million and generally starts to appear after the age of thirty. It is a neurological disorder with the characteristics of an autoimmune disease which causes muscle spasms and fluctuating muscle rigidity in the trunk and limbs plus increased sensitivity to stimuli such as noise, touch, and emotional distress.
People with Stiff-Person syndrome can be too disabled to walk or move, or they become too afraid to leave their houses because street noises, such as the sound of a horn, can trigger spasms and consequently falls. For some reason Stiff-Person Syndrome affects twice as many women as men.
Lindsay has her own blog which at present is her only contact with the outside world, and reading it will give you greater insight into her debilitating and life threatening disease.
There are drugs which can help a little to ease the pain; however, the only possible cure is to have a stem cell transplant which is available in North America, but which costs £300,000 and Lindsay is trying to raise the money for the treatment before it is too late.
Please help her if you can - Follow this link to donate money so she can have the treatment she so desperately needs.