SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Annabella: Mother of Daughter with Linear/Morphea Scleroderma

A mother's intuition never fails.

Pink Daisies for Annabella by Sherrill Knaggs, ISN Artist 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.

~ Update 05-19-03 ~

"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.

~ Update 05-22-03 ~

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!

To Contact the Author

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
Juvenile Scleroderma
PDF Brochure: What is Scleroderma?

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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: Saba Sadiq

Saba SadiqSaba Sadiq is the ISN Story Editor for this story.

Go to Annette: Diffuse Scleroderma

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)