My name is Eve, I'm 43 and just received the diagnosis of Sclerodema this week. (Aug, 2006)

For the past seven years I have been to more doctors than I care to mention. At first I was told I had lupus, then mixed connective tissue disease and now scleroderma. I'm the mother of two wonderful children, Ashley who's a 23 year old mentally handicapped fireball of energy, and Colton 12, my NBA star and light of my life. I work at a large radiology medical practice as a marketing director. Used to play softball, but gave it up when my body decided it didn't want to play anymore. Now I'm involved in my church, and advocate for families and individuals with developmental disabilities.

I have been fighting for so long trying to understand what has been going on -- now I'm just scared. Scared that for seven years I haven't had the treatments that may be able to slow this down, or that damage may be something that I'm not even aware of. I'm having problems swallowing, and my chest feels like every bone is breaking apart. I have an extremely high tolerance for pain and it isn't helping at this point.

I will be traveling from my home in Asheville, North Carolina to the Medical Univesity of South Carolina in Charleston in October. Until then I'm looking for answers and praying for strength. I'm glad I found your website and will update as I have more. Your stories are an inspiration that I'm not alone in this.. That's the hardest part, no one I talk to even knows anything about scleroderma... what is it, you don't look sick..

Email: duke16@charter.net


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