[Skip to Content]
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
Stories in Other Languages: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

(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

New email address needed 08-01-06 SLE
Old Email Prefix: alessandrastaiti
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
(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 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

We are revising our personal story submission program. If you would like to post or update an existing story on our site, please email isn@sclero.org.
Sheri M: CREST Syndrome (Update) It has been three years since I've posted and I am happy to say I am still doing well...
Go to Alex: Mother of Daughter with Morphea

SCLERO.ORG is operated by the International Scleroderma Network, which is a full-service U.S. nonprofit 501(c)(3) established in 2002. We provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. Donate or Shop Now.

Questions? Post a message in Sclero Forums or email us directly at isn@sclero.org. Or call our Scleroderma Hotline (English only), Toll Free in U.S. 1-800-564-7099 or Direct at 1-952-831-3091. Ask for our Welcoming Email.

Our headquarters postal mailing address is: International Scleroderma Network (ISN), 7455 France Ave So #266, Edina, MN 55435-4702, United States.

The most important thing in the world to know about scleroderma...is sclero.org!
Home   Medical  News  Sclero Forums  Support  Translations  Donate or Shop
Copyright 1998-2015, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.