Although I can't remember what it was like, there was a time when I did not have scleroderma. When I was eleven I was involved in a ATV (All Terrain Vehicle) accident. My foot got caught between the tire and the fender and it ripped up the side of my ankle pretty bad. We were out in the desert, so needless to say, the wound was full of sand and eventually ended up getting infected. But it healed up, or so I thought.
A couple of months later, I dropped a one pound bottle of hair conditioner, cap first, on the instep of my foot on the same leg. That formed a rather large bruise which faded to a purplish scar.
A few months later, those two wounds kind of joined together in a linear fashion and began traveling up my leg. It looked like a rope or a braid on the back of my leg. I lost a lot of flexibility in that leg. After a year of doctors with blank faces and no answers, which enraged me for at least the next ten years, my mom and I happened upon someone who actually knew what I had and she diagnosed me with Linear Scleroderma. I took d-Penicillamine for awhile, but being an angry teenager at the time, I was not a very good patient.
For much of my adult life I have lived with some form of denial and have not been actively seeking treatment. Unfortunately, the scarring is continuing to progress, albeit slowly.
I now have some lesions on my tailbone and spine that are beginning to concern me. The skin is so thin on my tailbone and there are no fat deposits, so sitting has become quite uncomfortable. Within the last six months I have also developed Vitiligo.
After seventeen years of dealing with scleroderma and somehow getting through the tortures of adolescence relatively unscathed, the Vitiligo has brought out many insecurities and fears. I jokingly say, "I now have spots to go with my stripes!" But all joking aside, I am approaching a point where I think I am ready to start fighting this on a variety of levels.
When I was first diagnosed there was no such thing as the Internet. I always felt that my family and I were the only ones in the world who knew what scleroderma was. Now I am in the process of trying to find a doctor, a sensitive one, who is willing to help me even though it isn't a disease that will kill me. I may see a nutritionist and a physical therapist, and maybe even a therapist to start talking about all the things I never dealt with because being in denial was the only way I could cope.
New email address needed 07-19-06 SLE
Old Email Prefix: tasada
Story posted 9-19-02
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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