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Toot: Atrophoderma
My case is abnormal.

Camellia by Sherrill Knaggs, ISN Artist 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
Toot
Email: (Withheld)
Story edited 01-10-06 JTD
Story posted 06-09-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
Atrophoderma
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs Sherrill 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
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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