I was not even seven years old when I was diagnosed with linear scleroderma. I was so small, I didn't even understand the whole thing, I just knew I was somehow "special" and maybe a bit sick. I just felt as healthy as a kid can feel.
My parents thought I was going to die, and doctors here in Finland did not really know what to do with me. There are not many scleroderma cases in Finland.
We were seeing the doctors very often, and I was the only one who never heard what was going on. I just knew the left side of my body, from the ankle to the side (including tummy) was weird looking, and my left leg was thinner than the right one.
In time, hospital and physiotherapists visits got rarer, and in 2005, I heard that my linear scleroderma had stopped progressing. It had only affected the skin and the fatty tissue under it and left the muscle perfectly health. The last visit to the doctor, and maybe because of my age also, made me think about my disease more than I ever did.
I started to research about scleroderma—the disease, medications, and different types. I was shocked and surprised. I realized that I am not the only person with this illness. I realized how lucky I really am, having just this "easy version" of linear scleroderma, instead of having systemic or something else. I feel like the luckiest person for being able to dance, which is my passion.
But also,at that point, I became a bit bitter, because my parents never told me those things by themselves.
I still have a lot of questions without answers, a lot of worries, because I know it is still not over.
I would like to be in contact with other teenagers with scleroderma. I'd like to hear your story and how you are coping with it. I'd love to hear about all of you and your lives. Feel free to e-mail me whenever you want!
I wish the best to all of you.
Email: [email protected]
Story edited 04-28-07 JTD
Story posted 04-30-07 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: