We noticed that our son was developing a purplish rash on his left leg when he was about four years old. The doctor did not know what it was, but prescribed a steroid or cortisone cream, which had no effect.
As he grew, we noticed other patches on his back and side. When he was about eight years old, a doctor took a biopsy of the area on his leg and hip. He said that it was morphea scleroderma and there was no known treatment.
Soon our son began to get bruised or dirty-looking patches on his face, and his teachers complained of poor hygiene. Of course, we let them know it was not dirt!
We have always asked for updated information whenever he has had a regular doctor's appointment. No one has ever mentioned any treatments. He saw a dermatologist recently who also gave us no hope. Our son is sixteen now.
The morphea has caused him much emotional pain, although he does not seem to have any motion restrictions or physical pain. One side of his face looks very gaunt and almost sunken in. He has a dark line and slight indentation going down the center of his forehead. Dark patches are on much of his face. One side of his chin is smaller than the other.
We are excited to see that there is information on the Internet where people pay attention to one another, and where we can find some help, hope, and support.
New email address needed 07-19-06 SLE
Old Email Prefix: denclan2
Story posted 11-28-00
Story edited VH1: JTD 9-4-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Pam Hop, Margaret Roof, Winifred Schillberg, Arnold Slotkin, and Juliet Youkhana. Plus donations in honor of Kim Thwaits, and in loving memory of Marta Marx, Jim Miller, and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
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: