When my daughter was about five we noticed the first of many lesions. Although we went to our pediatrician and a dermatologist, it was not until she was eight years old that I noticed atrophy in her face. An en coup de sabre developed, and she was finally diagnosed with linear scleroderma. After every possible test was run, systemic was ruled out, thank God!
Because my daughter's face was being affected so severely — with atrophy, hair loss, and partial loss of her eyebrow — we began a treatment program. It was two year's of intravenous steroids for three months, followed by a year of injected methotrexate, and then a year of oral methotrexate.
We have been off the medication for two years now. The drugs did help. However, last month our worst fears were realized when two new lesions developed.
We are awaiting our next appointment, but in the meantime I was wondering if anyone out there had experienced a similar situation. I have just discovered this site and read some of the stories. It really does help to know you are not alone. It is scary to think of going through this all over again.
Carrie is now sixteen years old. In 2002 she underwent the first reconstructive surgery, a fat flap graft. The operation took ten hours and recovery six weeks.
Although at the time my daughter vowed no more surgeries, she was not happy with the results and has therefore decided to continue. The next surgery will be in November of this year. The doctors are hoping to be able to do all the work they want to do in two more operations lasting about six hours each. The surgeries will be seven months apart to allow the face to heal in between.
Although my daughter has had some very difficult times dealing with the physical and emotional ups and downs, she remains hopeful. She is truly an amazing individual.
Story posted 01-15-01 SLE
Story updated 08-24-04 SLE
Story Artist: Shelley Ensz
En coup de sabre
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
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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