Warm Hugs
Get a FREE warm hug today at
Search sclero.org:
 
The most important thing in the world to know about
scleroderma is sclero.org with 5,000+ pages in 23 languages!
 
Earn $50 for PAH Marketing Research Survey!
Home   Donate/Shop   Medical   News   *Sclero Forums*   Support   Languages/Countries
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
Alex
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
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
Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success...
Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue...
Hazel: Morphea Scleroderma In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye...
Angela R: Linear Morphea Scleroderma I am twenty-five now and only have the two spots that I deal with pretty easily. I just hope it doesn't get worse...
Heather A: Scleroderma (South Africa) My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen...
More New Stories: May-July 2010
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 Alex: Mother of Daughter with 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

This website is certified by Health On the Net Foundation. Click to verify.
This site complies with the HONcode standard for trustworthy health information: verify here.

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.
Privacy Policy, Financial Disclosure, and Disclaimer.
© Copyright 1998-2010 International Scleroderma Network
All Rights Reserved
 
Home   Donate   Medical   News   *Sclero Forums*   Support   Translations   Search