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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: [email protected]
Story edited 04-28-07 JTD
Story posted 04-30-07 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Juvenile Scleroderma
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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!

Go to Emy: Localized Scleroderma
 
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Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
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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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