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
Stories by Month Posted
March 2005
Angel: Linear Scleroderma I have linear scleroderma. I have had it for a little over five years and I am only twelve...
Keith H: Eosinophilic Fasciitis (EF) I have a rare skin disease called eosinophilic fascitiis, a skin and muscle disease which causes tightness of the skin, and sometimes a reddish coloration of the skin in areas...
Martina: Linear Morphea (Ireland) I am twenty-four years old. I was diagnosed with linear morphea in September...
Millie: Morphea I was diagnosed with morphea scleroderma two years ago at age eleven. I want to know more people like me...
(Update) Trish: Spouse of a Diffuse Scleroderma Patient My husband had the surgery and his fingers are now fused into an open position. He will have the other hand done in June, at the Johns Hopkins Bayview Hospital...
Jill K: Lupus with GAVE (Watermelon Stomach) My hemotologist and GI specialists are very supportive but I am so frustrated at how little any one seems to know about GAVE disease...
Alicia B: Localized Morphea with possible Parry Romberg Syndrome The doctor kept saying something had eaten away at all the fatty tissue and the muscles which left it just skin, blood, bone, and nerve so when you look at it, it looks like I have dirt on my face and a gaping hole to go with it...
(Italiano) Ely: Sindrome di Raynaud Due anni fa ho incontrato una ragazza con il mio stesso problema...
Anita: Lichen Sclerosus et Atrophicus My concern is that it is spreading all over my body: both legs, my back, my neck and moving toward my face...
(Español/Spanish) Nora: Esclerodermia Morfea Les agradeceria que me dieran mas informacion a cerca de los tratamientos...
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 April 2005 Personal Stories
 
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