SCLERO.ORG
Search
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

Suzy H: Mother of Daughter with Morphea

Of course I was scared to death, as there was very little information then.

Pink Lillies by Sherrill Knaggs, ISN Artist When my daughter Elise was five years old, we noticed a dark mark on her lower back. I thought it was a bruise, but it did not go away. The pediatrician was concerned and sent us to a dermatologist who took a biopsy and confirmed morphea or localized scleroderma. Of course I was scared to death, as there was very little information then.

She was treated at first with antibiotics because the thinking was that it may have been caused by an infection, and then we used topical creams to keep her skin soft. At this point it had spread across her lower back, and one section had gotten hard. It looked like a burn scar.

I got linked to the group Kids Get Scleroderma Too, and there I found out that she should be seen by a rheumatologist. We took her to the dermatologist when she was about nine. He put her on a drug called plaquenil, a quinine derivative used to treat malaria.

At first we saw results, the skin softened and the mark seemed to get light around the edges. She is twelve now, and although it has not gotten worse, it does not seem to be getting any better.

For worried moms and patients, I want you to know that Elise is a beautiful young lady now. The morphea has not caused any ill effects in her growth or range of movement, as I feared it would. She is currently busy performing with a hip hop group. She is embarrassed and gets frustrated with the limited choice in bathing suits, but it does not bother her too much.

At this point I am wondering if the disease has run it's course and we could take her off the plaquenil. From what I have read this disease does seem to run its course, and I would like to give her a break from the meds but I am afraid she will get new lesions.

Any advice would be appreciated.

To Contact the Author

Suzy H.
Email: [email protected]
Story edited 04-30-05
Story posted 05-11-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Caregiver Stories
Juvenile Scleroderma
Morphea Stories
Morphea Treatments
Scleroderma Experts
Types of 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: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Swede: UCTD or Hypochondria
 
Most Recent Donors

Winn Schillberg
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!

In Loving Memory

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.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

 
The most important thing in the world to know about scleroderma is sclero.org!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.