The story of Lisa
I have a rare disease. It is called Anti Synthetase Syndrome with Dermatomyositis and Intersitial Lung Disease. This disease is a rare autoimmune disease which has affected my muscles, joints and lungs. It came on quickly and I was not diagnosed until it was nearly too late. I knew that something was really wrong but trusted that the local GP would help. Unfortunately, I was the one who had to help myself and with determination to find out what was really wrong I was lucky enough to see a Rheumatologist who immediately saw by my physical symptoms that I was ill. And so began the following day my 9 month journey of being in hospital. My first month was spent in ICU on a BiPap machine with the doctors trying to keep me alive. I became immobile, put on a feeding tube due to inflammation of the throat, suffered major DVT’S in both leg and lung and was on oxygen 24/7. This journey began in June 2011 and although I am mobile again, I still have trouble with my joints and muscles. I am Off the Warfarin but still on many other drugs such as steriods, chemo meds, medication used for malaria and many others. Whilst in hospital I got every rare reaction to some medications and also had a rare infection for 2 years which even the Professor of Medicine who was treating it had to spell to pathology. My lungs have been irreversibly damaged and I have lost about 40% capacity. Life has changed forever! I am glad I’m alive and owe my life to my Rheumy and my wonderful Immunologist who would not give up. I know my disease is rare and not well known by many lay and medical people but one bit of advice I would have is that when a patient tells you symptoms LISTEN. I will always have this disease but did not have to sustain such damage to my lungs if someone had of LISTENED.
Best wishes and gentle hugs to all of you who a special in having a rare disease 😉