I have had linear scleroderma since 1968, when I was seven years old. I always felt like I WAS scleroderma, as I have never met anyone else with the same diagnosis.
I grew up being poked and prodded and paraded in front of one specialist after another. Sometimes whole classes of medical students were brought to look at me.
Scleroderma affected the left side of my body, wrecking havoc in a very short amount of time. My left leg is two and a half inches shorter than my right and much smaller.
Due in a very large part to my mother's persistence and nightly therapy, I have good use of my leg and arm. Also, I believe Dr. Claybaugh, who treated me at Wesley Hospital in Wichita Kansas, saved my life in more ways than one. Mainly by finally fixing on a diagnosis and listening to my mother and her thoughts and feelings regarding my illness.
I did not realize how much I had to say, I have never discussed scleroderma with anyone. Most doctors I have seen since my last visits with Dr. Claybaugh (1974?) do not even know how to spell scleroderma, let alone treat any problems I might have that are associated with this disorder.
I am so fortunate that my scleroderma stopped advancing with only small advances on my right side. But I can say that scleroderma affected my life and still affects me in ways incomprehensible to "normal" people. I remember wishing as a child that I had polio instead. People could spell it and while they did not understand it's dimensions, it was accepted in ways scleroderma never was. Weird, huh?
I am sorry for the little girl I was with scleroderma. I enjoyed no personal space, was so sick for so long. The agony of my limbs slowly drawing up is something I cannot describe accurately, and besides, it is a private matter. But I am also happy for the little girl who had the extreme luck of meeting a fine physician such as Dr. Claybaugh and the many physical therapists who were endlessly patient with a mad little girl who tried to hate them all.
Well, that is such a small part of my story, but I hope it finds it's way to a mother with a sick little girl. If it does, do not despair. I have a good life. I have a good job, own my own home, my own car. But the best thing of all, something the doctors warned my mother I would never have—two beautiful, healthy children!
(AJ we need your new email address.)
Types of Scleroderma
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.