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
Stories by Month Posted
October 2007
(Update) Kristen: Diffuse Scleroderma I didn't think that I would make it through even the first five years. If you read the medical books, they are all full of doom and gloom. But, hey, here I am...
Sarah H: Linear Scleroderma When I was very young, two or three years old, my mom started to notice that the top of my scalp was changing...
Susan L: Diffuse Scleroderma I first noticed the swelling in my hands and feet shortly after my daughter was born in 2005, and thought that it was post-pregnancy fluid...
Emma C: Living with Localized Morphea Some of my earliest childhood memories are of my mother taking me to see doctors who were baffled by the strange marks on my back...
Julie H: Sjogren's Syndrome, Polymyalgia Rheumatica, and Peripheral Neuropathy I am in pain all of the time, have trouble sleeping, and if I do not take a muscle relaxer every night, I will not be able to turn my head the next day...
Francia: Undiagnosed I have a lot of pain in the back of my neck and problems with my throat when I eat...
Allen's Mom: Son has Scleroderma With his tightness of skin he has a very hard time bending, walking up the stairs and for the most part he cannot walk for more than a few minutes without his legs giving out...
Irina: Polymyositis When I was nine I had my tonsils removed by surgery. Immediately after the operation I experienced muscle weakness and I had no strength to do everyday things as simple as walking or even getting up from bed...
Joshua: Morphea My morphea doesn't look like most. In fact, it looks almost star-shape, mostly because it is in lines and not a solid shape. It is not hard either, so my fear is that it could be keloid morphea...
(Update) Jill K: Lupus with GAVE (Watermelon Stomach) I have now been diagnosed with Mixed Connective Tissue Disease (originally I was told I had Lupus.)...
(Update) Doni: CREST Syndrome I had my finger amputated in August, 2005, and then again in August 2006. The first time they didn't take enough off the finger, so it abscessed again...
Tata P: Diffuse Scleroderma I am thirty-two years old, and I have been suffering this illness since I was nine...
(Español/Spanish) Tata P: Esclerodermia Difusa Hola, tengo 32 años, y padezco esta enfermedad desde los 9...
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 New Patient Stories: September 2007
 
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