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
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
(English) Alex: Localised Scleroderma
(Italiano) Alex: Sclerodermia Localizzata

Birds for Alex by Shelley Ensz I am a thirty-four-year-old woman, and I have been suffering from localized morphea scleroderma for about twenty years.

The disease initially started with a very small mark on my right thigh that seemed to be a bruise. Then the lesion changed its appearance and extended along the entire leg. Meanwhile, a small mark also appeared on my face, which was almost certainly another manifestation of the same disease. I went to see various specialists, almost all of whom agreed on the diagnosis and on the impossibility of an ad hoc therapy, explaining to me that the real cause of the disease is unknown, along with its treatment. They suggested I try various treatments that have not been of much benefit apart from softening the skin.

I had a series of immunological tests performed (including antinuclear antibodies) to check if this was a systemic form of scleroderma. Fortunately, these tests were all negative.

Now, having read the information on www.sclero.org, I am no longer sure that these results completely rule out the more serious form of this disease. For the record, I also suffer from celiac disease.

*Editorial note by Dr. Magdalena Dziadzio and Dr. Mario Gismondi: From the data currently available, there is no evidence that the localized form of scleroderma can turn into the systemic disease.

To Contact the Author
Alex
New Email Needed 08-01-06 SLE
Old Email: alessandrastaiti@intesasgr.it
Story posted 2-14-01
Editorial Note added 3-15-02
by Dr. M. Dziadzio and Dr. M. Gismondi
Translated from Italian
by Kevin Howell 6-17-02
Story edited VH1: JTD 9-4-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
LINKS
(Italianio) Alex: Sclerodermia Localizzata
(Italiano) Sclerodermia dalla A alla Z
Morphea Scleroderma
Voices of Scleroderma Volume 1
This Story is Featured in Voices of Scleroderma Volume 1
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
ISN Translator: Kevin Howell
Kevin Howell is the ISN Translator (Italian to English) for this story. He is a Clinical Scientist for Professor Black at the Royal Free Hospital in London.
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
Donna: CREST, Raynaud's, possible Fibromyalgia I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998...
Jessica G: Parry-Romberg Syndrome By the time I was about five years old, the disease had already disfigured my left side drastically. I have had over fifty operations and surgical procedures for Romberg's....
Leslie R: Scleroderma, Vitiligo, Lupus, Anemia, Hypertension and Type 2 Diabetes He told me that I have scleroderma and explained what this disease is about. After suffering so long I finally got some answers...
More New Stories: Feb-August 2008
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Kannada  | 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.
Keep on Surfing!
Go to Alex: Mother of Daughter with Morphea
Contact ISN. We are a full-service nonprofit agency.
Email: isn@sclero.org or
or post a message in our Sclero Forums !
Shop, Join or Donate Now
(Also see: Contact ISN )
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
USA
Toll Free Hotline in U.S. 1-800-564-7099
Direct Line 952-831-3091 (U.S.)
(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2008 International Scleroderma Network
All Rights Reserved