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

Cathy: Probable CREST Scleroderma

When he told me I had scleroderma, I had no idea what it was.

Flower for Kathy by Shelley Ensz It really started to go bad for me in November of 1999. I work on rural mail delivery in Quebec, Canada, and our winters can be quite cold. I had always had cold feet and hands, but this particular winter seemed to have been a lot harder. My hands were swollen all the time and very painful when cold.

By February of 2000, I had to stop working and my family doctor sent me to a rheumatologist in March. By then my right hand was hard as rock. When he told me I had scleroderma, I had no idea what it was. Through family, friends, and the Internet, I came to learn all about it.

Not knowing which type of scleroderma I had was a little scary. From my symptoms, I figured out that it was either CREST Scleroderma or diffuse scleroderma. Because of our hospital's pressure tactics, the test I needed to confirm what type of scleroderma I had could not be done.

In September, my test was finally done and came out negative. In the meantime, I have been going to a skin specialist for treatments with natural products, and it has been working great. In the past two months, I have gone from not being able to hold a knife to peeling potatoes. I have been back at work since April, but I am not sure for how long since winter is just around the corner.

~ Update January 2001 ~

Compared to last year, my life has made a complete turnaround because of the fine treatments I have been getting. I am doing extremely well even though it is the coldest time of the year. I even stopped some of my medication and have cut down on the number of treatments I receive.

For those of you who see no hope ahead, this is good news! Chin up!

To Contact the Author
Cathy
Old Email Prefix:Firemac
New email address needed 07-18-06 SLE
Story posted 9-28-2000
Email address updated 1-30-02
Story edited VH1: JTD 8-9-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
LINKS
CREST Scleroderma
Canadian Support Groups
Difficult Diagnosis
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 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 Cathy B: Spouse of Scleroderma Patient
 
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