A mother's intuition never fails. When I first noticed the marks on my little girl's left thigh during bath time last summer, I got a sick feeling in my stomach. Right away I showed the marks to my husband and said that I thought it was morphea. I am not a medical professional or anything, I just had a feeling about it because my sixteen-year-old niece has had morphea on her face since she was five, so I was already familiar with what it may look like.
Even after two doctors misdiagnosed the marks, I still insisted on another opinion and that brought me to a dermatologist who agreed with my original gut feeling. Since August of 2002 my little four-year-old angel has had marks appear all over; one on her right butt cheek, one on her lower back, two on her torso, two on her foot, and the small marks on her thigh have taken over the entire length of her leg in a matter of months
We are at a crossroads now. Do we give her drugs or continue the ultraviolet UVA-1 light therapy? The light therapy has softened up the spots remarkably but I just noticed some new growth on her other leg. Do we try drugs at such a tender age?
Please help. Is there anyone out there with information on giving children drugs related to this 'mystery' skin disorder?
hope and pray to hear from other caregivers or patients. Best wishes and good luck to all. Thanks in advance.
"Mommy it hurts," she cries. I am a desperate mother in a frantic search for stories of other parents who have children who suffer from morphea.
Another spot has appeared. When will it end? "Mommy it hurts," keeps ringing in my ears at bedtime and I can't stand the emotional heartache any longer.
Gabrialla was diagnosed back in August 2002 and has seven new growths since. The most serious one covers her entire left leg. We are afraid it will hinder the growth in that leg, her mobility, and scar it for life.
She is at such a tender age so we do not know if we should try drugs. Please take a moment and share your stories with me. Let's exchange ideas. We currently have her on UVA-1 light therapy and it is softening up the skin but can drugs stop new growth from forming? Any information would be greatly appreciated.
Any children out there on methotrexate ?
I am eager to hear stories of any morphea children using this drug. My four-year-old daughter has new lesions surfacing almost monthly. When will it end? Will the drugs help?
We are currently doing the UVA-1 light treatment and I am willing to share how that is going. At this point, the methotrexate is an option, but I need to hear about other children or adults who are on it.
Is it working for them? Have any new spots surfaced since on medication? I am so desperate for any information. Please help!
Email: [email protected]
Story posted 5-13-03
Updated submitted 5-19-03
Update posted 6-30-03
ISN Senior Artist: Sherrill Knaggs
Story Editor Saba Sadiq
PDF Brochure: What is Scleroderma?
Saba Sadiq is the ISN Story Editor for this story.
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.
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 protected] to request our Welcome email, or to report bad links or to update this page content.