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Toot: Atrophoderma

My case is abnormal.

I am sixteen years old and ever since I was eight, I have had a skin disorder known as Atrophoderma. It is also known as Atrophoderma of of Pasini and Pierini (APP).

It has been really hard trying to be active and interact with other people when I am constantly getting asked, "What is wrong with your wrists?" or "What is that on your feet?"

You see, my case is abnormal. This rare disorder is only supposed to spread to your back chest and stomach but mine has spread onto my wrists, elbows, feet, knees, and a little on my shoulders and in the palms of my hands. If I get cut, instead of a scar this skin disorder takes over.

The only comfort that I get is that my doctor told me that it should never spread to my face. But I still fear it will. I am terrified that one day I am going to wake up and be hideous. And I feel very sorry for all the people out there who have worse cases than I do.

But if there is anyone out there who needs support feel free to email me and thank you for reading my story. I appreciate it.

To Contact the Author

Email: (Withheld)
Story edited 01-10-06 JTD
Story posted 06-09-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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 Tore: Linear Scleroderma

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