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

Halina: Mother of Daughter with Morphea (Poland)

I did not know anything about morphea in the beginning, so I went on the Internet and then cried for a few days.

Jenny in Daffodils for Halina by Sherrill Knaggs, ISN Artist My story starts when we used to live in New York. My daughter was four, when I discovered a small spot on her left foot. I did not want to despair, but after awhile I took her to my dermatologist and he gave the right diagnosis of morphea.

I did not know anything about morphea in the beginning, so I went on the Internet and then cried for a few days. At the same time I started to look for a doctor. Even though I was living in a big city it was not easy to find the right one. Finally I found one of the best known morphea doctors and my daughter started her treatment. The doctor gave her a drug named Plaquenil. She took it for almost two years, but it did not make any changes or improvements. Then I went to another doctor and he advised me to drop all medication and just check her every six months.

When Sonia was seven, we decided to go back to Europe and I tried to find a doctor over here. We went to Poland and started her treatment there. I cannot say that it is better here but we receive different treatment. It has not helped so far, but I am hoping that finally something will start working.

In the meantime, the disease has spread on her whole left leg, some spots appear on her right leg and a few spots on her belly. I tried almost everything including unconventional medicine, but I still have the feeling that I missed something. I know there has to be some medication or treatment that can help.

If somebody would like to share your own experience with me I will be more than happy to answer and share my knowledge and my experience. Thank you.

To Contact the Author

Email: [email protected]
Story posted 10-20-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Caregiver's Stories
Juvenile Scleroderma
Scleroderma Experts (Worldwide)
ISN: Polish

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 Hamza: Linear Scleroderma
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!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.