Research into the rare auto immune condition Pyoderma Gangrenosum
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I suffer from the rare auto immune skin disease Pyoderma Gangrenosum. Although statistics say that roughly 1 in 100,000 people suffer from it many cases go unreported and it is often misdiagnosed so statistics may not be accurate. Many medical personnel have never heard of it. PG causes deep ulcerative chronic wounds on the body, mainly on the legs that can increase rapidly in width, length and depth. It can be associated with bowel disease and arthritis as well as on its own (in my case rheumatoid arthritis) It is extremely painful and often nerve endings are exposed resulting in the patient being on very heavy painkillers such as opiates such as morphine and being In extreme pain which is horrendous In my case I had one wound on the inside of my right ankle. It was very deep and large and on three seperate occasions my femoral artery burst and I almost bled to death. I was admitted to A & E at least 29 times not only with arterial bleeding on the three occasions but also for searing horrific pain. Because of so little research ( there has been just one clinical trial comparing the result of two drugs on PG I know of) More research is needed into this horrifically painful debilitating dangerous misdiagnosed disease. My diagnosis took almost two years during which it was just trial and error with several different drugs some of which made me ill. It needs specific research so it can be diagnosed easily and treated appropriately and so that medical personnel and the public are aware of it. I had my wound for nearly SIX years and it was extremely stressful painful and debilitating and I ended up with post traumatic stress disorder and I am frankly lucky to be alive. It hasn't just affected me, it affects friends and family who have to watch you go through the most horrendous pain and heartache and trial and error with different treatments and drugs.
Please help me to campaign for a research fund into this terrible disease.
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