Hi, My name is Theresa and I am now 37 years old. I was diagnosed with Scleroderma at age 3. I have been told that I have localized Scleroderma. At age 3 I was lying asleep in the back seat of our car when my Mom said she noticed some milky white spots on the side of my left leg. When she noticed they were not going away she took me to the doctor. They
passed me around until they ended up doing a biopsy which confirmed scleroderma. From that point on it began to progress very quickly and by the age of 6 I was in a wheelchair. My left leg was approximately 2 1/2 inches shorter than the right and I had what appeared to be a club foot. They tried putting pins in the bones to lengthen my leg, which was rejected and they had to remove it. My mom had to put me in a brace every night that was supposed to stretch my leg to lengthen it. All I did was cry myself to sleep because it was so painful. I spent my entire first grade year in a wheelchair because of all the experiments they tried. I had to be
After several failed methods they just put me in a built up shoe because I was 3 1/2 inches shorter on the left side, the circumference of my leg was only about 1/3 of my right and I had no muscle left. My left foot was 2 sizes smaller than my right and I had to wear special shoes. Finally, at the age of 10 they decided to amputate. I now wear a prosthesis (you would not believe some of the contraptions they expect people to wear). I am very self conscious about it and do not generally like people to know. I guess this is because I was teased horribly as a child and I have grown up to be very independent and when people find out they just stare and have
pity on me. I don't like pity. Maybe I have the wrong attitude, but I cannot help it.
All through my growing up years I felt like a lab rat. The doctor would come in with his
entourage and they would all jot down notes and ask questions as if I was not even there. I have had several doctors ask me what Scleroderma was.
I have never taken medication for my scleroderma and did not even know that you could until I was about 28. At age 30 I started having swallowing problems and GERD. An esophageal biopsy revealed that it was due to the scleroderma. I just have to be careful what I eat and I can usually handle it. I also have always had great fatigue and as time goes on it gets harder and harder to make it through the day without needing a nap. I also have periods of excessive fatigue where I don't feel like I can even get out of bed and it hurts to walk up or down the stairs, but I usually pull through after about a week. It is a big joke in my family that Mom needs her beauty rest. I have four girls and they are very helpful and do a great deal for me. I don't know what I would do without them. I also have a husband that is very patient with me when I get that way and tells me not to worry about it when I cannot work.
I work at home doing medical transcription, so this allows me to work at my own pace. If my hands get too stiff or just don't want to function I can stop and take a break for a while.
The older I get the more the side effects bother me, but I just take some Advil and try to get regular exercise and eat the best I can. I feel that I really have it easy as I know there are others that are not so fortunate. I send my thoughts and prayers to all and wish all the fullest lives possible.
Thanks for listening to my story. I would love to hear from some of you.
theresa409@juno.com
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