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.
Story edited 01-10-06 JTD
Story posted 06-09-06 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
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:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email email@example.com to request our Welcome email, or to report bad links or to update this page content.