Search sclero.org:
Thanks to Actelion
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

Ariel: Linear Morphea

Luckily, it only affects my skin, so I can still dance and play the piano.
A Star is Born, for Ariel by Shelley Ensz I am fourteen years old and was diagnosed with linear morphea on my right arm about two years ago. Luckily, it only affects my skin so I can continue with my hobbies of dancing and playing the piano.

I started using Dovonex about six months after the disease was diagnosed, but unfortunately, there weren't any noticeable improvements. My doctor then suggested PUVA light therapy. However, in the area in which I was living at the time, there was no UVA-1 light, so the doctors created a protocol for just regular UVA light. Through a mistake in carrying out the treatment, the light caused second degree burns on my arm.

Now, six months later, I have tried to use Dovonex again, but the skin still can't tolerate it. Because of that, we are thinking about starting PUVA light therapy again and would like to know if anyone has tried this and has experienced any improvements. Thank you!

To Contact the Author
Ariel
Email: jiveREL@hotmail.com
Story posted 8-22-02

ISN Artist: Shelley Ensz
Story Editor: Judith Devlin
LINKS
Juvenile Scleroderma
Linear Scleroderma
Morphea Scleroderma
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 Ariel D: Pansclerotic Morphea
 
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 1998-2010 International Scleroderma Network
All Rights Reserved