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

Michelle D: Limited Scleroderma and CREST

It is possible to have a life with scleroderma.

Flowers for Michelle by Shelley Ensz I was sixteen and wanted to lose weight. I do not know if it was a reason for me getting the disease, but the doctor said it did not help. I just about quit eating to lose weight. I was rather heavy. I went from 200 pounds down to 114 pounds in just a little over six weeks. I thought I looked good, but my family felt differently.

I began to get very tired. I thought the lack of nutrition was the culprit. I also began to lose flexibility. I thought sitting on the couch was the reason. My family kept pleading with me to go to the doctor. Finally, about a year or so later, I went. I had a itchy line of dry skin across my belly. I was told it was just a form of fungus. I was told I needed to exercise more and that I just needed to eat better.

I was finally diagnosed a few months later. I could not hold down a job. I stayed dizzy and tired and sick. I was just too run down to make it through a day. Finally I was sent to a doctor who knew what I had and confirmed it with a blood test! You have to specifically be tested for scleroderma.

I was told of all the things that happen to people with scleroderma and I gave up. I waited to die. This was the hand dealt to me. One day I decided to get up and get moving. I started giving myself a bath and dressing myself again. I have been in remission for about 11 years now. My scleroderma is just external. My hands and my face are mildly affected. I did start eating again. I do work now.

The CREST part is little tiny red dots that appear on my hands and I have red blotches on my face and my nose is red. I have Raynaud's. My hands turn blue to purple and I am sensitive to cold. I also have the calcium deposits on my hands and arthritis, too.

I am doing fine now. I have learned to live with the few symptoms I have and remember that there are others worse than me. It is possible to have a life with scleroderma. However long we have, just make the best of it.

To Contact the Author
Michelle D.
New email address needed 12-20-06 SLE
Old Email Prefix: Thumper33D
Story posted 4-9-02 SLE
LINKS
Calcium Deposits
CREST
Raynaud's
Scleroderma
ISN's Voices of Scleroderma Volume 2
The story on this page is featured in our book, Voices of Scleroderma Volume 2 ! International Scleroderma Network.
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 Michelle H: Sister, Daughter and Friend of Scleroderma Patients
 
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