Ashley

Hello Everyone!

My name is Ashley, and I was diagnosed with Scleroderma in 1985, at a time when it was thought that it was only possible for older women to get it. I was three years old then. My first signs were flu like (vomiting, naseau, fever, etc.) and a rash like hives. I had just returned home from Florida on vacation (I live in Indiana.) when it all started. At first the diagnosis was just an allergic reaction, but then as i took antihistamines and they didn't work, the doctors were starting to wonder. They took many biopsies from my skin and analyzed it. It took them a year to find out it was Scleroderma, and by then it had spread down my arms all the way from my shoulders. (My Scleroderma appears from both shoulders down my arms. Think Angel wings!) My doctor at the time decided it was time to put me on amocycillin, which did no good, so they switched me to dylantin which put it into remission. They also decided to use me as a learning subject.
At first it really scared me to be seen by all those doctors, but I wanted to help pave the way for research, so I agreed. They had me sit in a hospital bed with protractors taped to my arms and all my joints to measure my range of motion, and snapped pictures of me all day long, while they took various biopsies and tests. It was so terrifying for me, I was only six years old. I must've saw over 1000 doctors in one week, twice a year, for about five years then down to once a year.

In between all this madness I had corrective surgery to fix my hands. You see the scleroderma stopped the growth of my hands' bones at age five and I was told I would never be able to write, or type. (Ironic? LOL!) Anyways they stretched my tendons so I could barely move them, and then sent me to physical therapy for the next three years.

I have been in remission now for almost 11 years. The docs say it probably will stay that way the rest of my life! In school I was one of the top of my class, and actually won an award for best penmanship, and artistic awards for my artwork. I am now almost 21 working to pay for my fiancé Conan's schooling. We have two years to go until we marry and I follow him off to wherever he goes for med school. He was so touched by my story he wanted to pursue a career in medicine to help the research of our disease. Isn't that so sweet? I am currently making extra $$ making jewelry by hand, and enjoy swordfighting in medieval reenactment. I also am involved in many charities and fundraising in Scleroderma, MS, MD, HIV, etc, etc. I find it helps me cope by helping others lives and talking to patients at hospitals with scleroderma and other diseases and telling them my story and how it's ok to be scared, but know that they are unique and special and that no matter how afraid you are you can overcome anything life throws at you.

I know that in my life I have not had the best of luck with health but there are people out there that are worse off than me and probably worse off than some of you, and that makes me see clearer about how truly lucky we all are to be able to be here and tell our stories. I guess it all makes me very appreciative of my life and not be selfish into thinking I am worse off, because I am glad that I have this disease. I call it my reality disease because I see people for who they are not what they appear outside.
If any of you ever wish to contact me feel free to email or write me and I will try to reply as soon as I get the chance, I am very busy with organizations and such. But thank you all for listening and I want you to know that you are all truly beautiful souls and no matter what nothing can ever scar that!

Love and Godbless,
Ashley - zev19lexx@yahoo.com

P.S. Always know that someone is there and loves you no matter what you are, because god is with all of us! :)