TV Video: Hannah - Health Insurance Story. View her fight for insurance coverage for the SCOT Trial, with David Becker, ISN Assistant News Guide.
Tackle Scleroderma! Join/Shop/Donate
SCLERO.ORG by the nonprofit International Scleroderma Network (ISN) is a full-service nonprofit charitable foundation providing stellar research, support, education and awareness
Search sclero.org:

Patient & Caregiver Stories Main Menu
(English) Stories 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
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 ;2009
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
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
Halina
Email: halkon2@wp.pl
Story posted 10-20-03

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Caregiver's Stories
Juvenile Scleroderma
Morphea
Scleroderma Experts (Worldwide)
ISN: Polish
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs Sherrill 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
Judith Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
 
Go to Hamza: Linear Scleroderma
 
SCLERO.ORG is brought to you by the nonprofit International Scleroderma Network (ISN). The ISN is a full-service nonprofit scleroderma charitable foundation providing stellar research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
  1. Post a message in Sclero Forums!
  2. Email: isn@sclero.org
  3. English Email Form
  4. Español Email Form
  5. Italiano Email Form
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States
Toll Free Hotline in U.S.
Hours: 9am-3pm CST only.
Please leave a complete message, in English.
1-800-564-7099
Direct Line
1-952-583-5735
We are also known as the Scleroderma from A to Z web site.
© Copyright 1998-2009 International Scleroderma Network
All Rights Reserved