The story of Stephanie
Ever since I was little I always thought I was slightly different but still normal in my parents eyes. From the age of 13 or 14 I always got what I called a sore edge and hurting joints which was always due to “growing pains” as the doctor put it. I was always told it was always that and it would go away eventually when I stopped growing. When I got into my adult years I was about 17 or 18 and I started to feel a lot more pain in my joints and in my stomach (where my sore edge always was). I went from doctor to doctor. Test after test and nothing would show. I was in college and a friend I met Sam Locke ( who has always been an advocate of people with rare issues) who introduced me to what is called EDS – Ehlers-Danlos syndrome. With this information I was finally diagnosed with it and was given the Hyper-mobile side of it. Then I was still being investigated for this side pain which would knock me sick and was so painful it would knock me out at times it got really tough to cope with. The only thing that would help was IV morphine BUT it would also make the pain worse before it got any better. Eventually after I had my gall bladder taken out and going through years of being blamed for a drug addict from opiates someone in A&E gave a suggestion that it may be SOD – Sphincter of Oddi dysfunction. I went through a lot of doctors and a lot of time dealing with people saying I am fat and that’s my problem and that it was just drug addiction and I would receive no help with pain. It took many years for me to start to get used to daily pain and not asking for help because no one fully believed this condition existed. I had another good consultant who forwarded me to a specialist in Manchester Royal. There I received my diagnosis of my condition which has no cure and no specific medication that helps keep pain down enough. I am awaiting surgery still at the age of 25 for a risk that may help for a few months or it could make this condition much worse.
I do deal with depression and have tried to end my life before but thanks to people like Sam and doctors who really gave me a lot of thought along with some nurses who would sit by my bed and push for any help they could from on call doctors I am still alive to tell my story and somehow bring hope to anyone who is going through probably one of the toughest things in their life to live with.
I always hold onto hope that one day me going through all this and staying alive for it will help future generations who have these problems and that they will find some way of helping anyone of us with rare and unusual diseases and problems.
Stay strong, spread awareness and always think twice before you judge a person who may “look” normal when its just another invisible illness that likes to hide away from sight.
This is coming from a person who has SOD, EDS, Fibromyalgia and depression. Own what you have because each one of you with a rare condition are pioneers for the future generations of the entire human race.