I always knew that something wasn't right with me. When I turned 10 yrs old my symptoms began to creep. At first it all started because of a very itchy spot on my back near the right scapula. Within a matter of a few months, my right eye lid suddenly drooped covering almost my entire sight and soon after that my right brow became very indented - "encoupe de sabre." Being in Junior high school and then high school those years were very terrible for me feeling quite ugly.  I made no school friends. I had no interest in learning anything because I was so consumed with how can I make this go away and look normal. No one ever dreamed that my itchy spot and my eye brow and lid problems were connected.

Until my last eye lid surgery in 1987, I had the same eye specialist from the time I turned 11. until the last such surgery in 1987, trying to raise my lid to look as normal as the other. It did help for almost eight yrs now. But, it is drooping real bad again.   I developed a red line from my scalp down the right front side of my forehead that is denting in. The skin on my right side of my face has lost the elasticity and seems to be falling, leaving me with no control with any facial expression. As a result of 4 eye lid surgeries I can't close my lid at all anymore.  I wear a facial sleep mask to sleep or else I have terrible eye pain upon wakening in the morning and the swelling takes hours to go away.

I recently had surgery due to cervical spyondylosis in my neck. My back mainly spinal cord area is very weak due to several major muscles that atrophied at an early age - herniated disks and arthritis pain weakens my feet every day. When I get a cold or flu it takes me 3 times as long to heal than normal. I was told by a Dermatologist whom is well known for her knowledge with this disorder I had Morphea and to take Vit. E 400mg 2x a day, it might help. She turned suddenly to leave the room when I spoke up and stated that I have had this disease since I was 10 yr.old and I am now 36  - what will be next? She coldly told me that ,"I should be grateful I have lived so long" I was devasted. I couldn't find a doc that wanted to be my personal physician because they knew so little and I was fearing that it had already invaded my lungs.

In 1987 I was finallly diagnosed with biopsy of hard plaque spot of my backthat finally gave a diagnoses of Scleroderma, morphea, Linear, en coupe de sabre.  Since 1987 til now I am only concentrating on living for now and every moment. Two yrs. ago I met a a lady and we have alot of the same interest in life. She is teaching me about antiques and we enjoy going to auctions. Just having her with me helps me forget my aches. We laugh alot and love to go to Bingo.

I thank the Lord for all my wonderful family, my children, my understanding husband and my special friend Terri Sharkey. My disease is still progressing at a slow rate that approx every 6 to 8 yr for it to actually be fully deformed and quite noticeable. There is hope for everyone beause it seems to treat people with the disease is different ways . I was told that children that are born with it usually don't live past 10 and I proved that theory wrong. I have never been on any meds, like methotrexate or prednisone or antibiotics, although I found that DMSO works great (not to be taken internally) on achy joints. so if anyone would like to contact me any further I would love to share any other info I may have or learn.

I never knew that there were others with the same such despair and that there is someone that might actually look a little bit like me. I have been alone with this for 36 years , but I am not alone anymore.  None of us are and we will be here very anxious to learn more or to help. So please e-mail me at Rayann1234@aol.com