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Emmi: Linear Scleroderma and Vitiligo
Finland

Pansies by Shelley Ensz, ISN Artist 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.

To Contact the Author
Emmi
Email: emmi.myohanen@gmail.com
Story edited 04-28-07 JTD
Story posted 04-30-07 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
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ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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