The diagnosis of scleroderma is not a wonderful one, but all we can do is live with it, and try to help each other. The person who has pulled me through much of my own experience, with humor and hope, is Dick, my best friend's Dad, who went through an experience identical to mine, except a generation earlier, when even LESS was known about the disease. Like me, he was handed a grim sentence at an early age, and in school was known as "the kid who's dying". Well, Dick is now 76, and showing no signs of dying any time soon, whatsoever! He's probably out-lived many of the kids who taunted him back then for his skinny and discolored left arm.

Looking back, I think I must have had scleroderma since I was about 3. Since I'm 50 now, that would've been in 1953, when not much would have been known about this rare and strange disease.

I can remember being almost crippled at that age from knee and ankle pains. There were days when I cried and pleaded not to have to walk. My mother was a Christian Scientist, and did not believe in medical treatment, so I was not evaluated or treated.

When I was 13, I noticed a small brownish patch on the back of my left arm. It didn't go away, got larger, and eventually turned white and waxy-looking. I still did not get treatment, nor did I when my arm atrophied to the point that it looked like that of a polio victim. When the muscles in my hand and arm were dying, the pain from muscle spasms was very bad. I had to run my hand under hot water to get it to relax. Sometimes on long car trips, I would have to stop at a road side restroom just to run my hand under hot water.

My mother did not want anyone to see my shrunken arm, so I had to keep it covered at all times. While my arm was getting smaller and smaller, I also noticed the appearance of at first brown-purple, then waxy, spots, one on my chest, on my hip, on my right arm. The spot on my chest developed into a tight, scar-like tissue that itched and burned. Even now, when people see it, they ask if I've been badly burned. The other spots remained brownish-purple, without turning into scar tissue, but the skin and muscle under them shrunk and pulled in, leaving some pretty serious indentations. I call them my "dents". I have dents in some of my bones.

I was not able to get medical attention until I was 18, which is when my mother passed away. The first doctor I saw thought I had had polio, but passed me to a dermatologist for further analysis because of the spots on my skin. I was passed around for a year, and even made a guest appearance at some dermatological convention at University of Washington, where I sat in a small examination room and chatted with all the doctors who had come to view "my interesting case".

From that experience, someone had the urge to do a skin and muscle biopsy on my left arm. I was passed along to a rheumatologist who did blood work and informed me that I had scleroderma. He didn't say what type, and I don't think he would've known at that time--it was 1968, and perhaps not much was known about the scleroderma sub-types. (A strange coincidence was that at this time I moved in with a new college room-mate, who told me that her Dad had had symptoms very much like mine, and she was sure it was the same disease. Thirty years later, her Dad and I still compare many notes on our experiences, and are still the closest friends!)

The bottom line was--the rheumatologist told me I had something rare and serious, and he did not feel that I would live out a normal life expectancy. I was engaged to be married at the time of diagnosis, and he said that he did not believe pregnancy would be advisable, as it could aggravate the course of my disease.

I never did have children, but that was because I had severe endometriosis and ovarian cysts and an eventual hysterectomy. If not for that, I would have taken the risk.

As the years passed, and I got more opinions, I learned that I didn't have the systemic scleroderma that I'd been originally diagnosed with, but instead I had generalized morphea.

I know now, from reading as much as I could, that my disease did not arrest, as it has for some people. In the years since my diagnosis, my whole left side has atrophied. My left side, leg and face are not as dramatically affected as my left arm and shoulder are, but you can see it if you look. When I was definitively diagnosed with morphea about 8 years ago, the doctor felt it had stabilized and did not recommend any treatment. I don't think it's stabilized, though, even though I don't have any new lesions or scars. I still have pretty severe joint, muscle and bone pains, and muscle spasms.

My big concern now is joint pain. As I write this, I feel that, at the age of 50, I'm as crippled and afraid of walking too far as I was as a three year old child. My knees are incredibly painful. I take large doses of anti-inflammatory drugs, but I don't think it helps much. I'm single and I'm my only source of income, so I keep going and going, like the Energizer Bunny, but I would love to have some relief from this! I have also had my thyroid quit working, which seems to be the case with many people. I'm sure there's a connection with the morphea, but I don't know what it is.

If anyone lives around the Seattle area and can recommend a good rheumatologist, I would love to hear from them. And I would love to hear from anyone who is dealing with this disease. I don't think my experience with morphea is very common, so I don't want it to scare anyone with this diagnosis, but if you have had a similar experience, perhaps we can support each other. All the very best to you!