Visit Sclero Forums, Chats and Blogs!
 
Search sclero.org:
 
The most important thing in the world to know about
scleroderma is sclero.org with 5,000+ pages in 23 languages!
 
Donate in MemoryIn loving memory of Tom Regensburger, and Vera Kortan . (Donate)
Home   Medical   News   *Sclero Forums*   Support   Languages/Countries
Earn $150 on July 30th in Boston Marketing Research Study if you have scleroderma or CTD and have been screened for pulmonary hypertension!
Frog jumping for joy by Shelley EnszPDF Flyer: Boston Marketing Research Study. Schlesinger Associates-Boston, a national marketing research company, is currently looking for patients who have been diagnosed with Scleroderma or other Connective Tissue Disease, who either have pulmonary hypertension or who are regularly screened for it, to participate in a July 30th paid marketing research study in Boston. Read PDF Flyer: Boston Marketing Research Study or call Katherine at 617-542-5500 x310. Schlesinger Associates-Boston. Posted 07/26/10.
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

Dorothy: Scleroderma CREST

In 1890, Dr. Osler named it as "One of the worst of all human ills."

Blue Flower by Shelley EnszDespite many predictions, I have had scleroderma for thirty eight years. In 1890, Dr. Osler named it as "One of the worst of all human ills." However, no matter how serious one's illness is, having a positive attitude is the only way to go.

Give the best you are able and you will receive the best available. I know the higher power is in control and that I am totally in His hands. For this reason I convened a support group in South Africa to help encourage many others with scleroderma.

I do not intend to minimize the seriousness of this affliction for it is very hard to live with, but it can be done and surely I am living proof with all my bent fingers typing away.

So many people have never heard of scleroderma, therefore, one must not expect too much understanding, but contact with others who have it is a great advantage.

I feel I must refer to one medication and that is a mild antibiotic daily which has helped cleared my finger infections allowing me the use of my hands.

Blessings to you all who have scleroderma and do not let "IT" have you.

~ Update 05-05-09 ~

My name is Dorothy, age somewhere in the young 70s and I have had scleroderma for thirty-nine years. I have an English father and an Armenian mother. I was born in Iraq, schooled in Egypt, then evacuated to South Africa by the British Army and I was married in Rhodesia.

This is my 39th year with scleroderma so there is not much I do not know about it. Particularly since I worked part time in the medical profession for twenty-five years in Africa. In Cape Town I convened a support group which proved to be much encouragement to the participants, as I have a positive attitude. This is the only way to cope with any affliction which is not curable. Give it your best and you will receive the best available.

I was invited to be on television, the radio and to a group of doctors and rheumatologists at the Groote Schuur Hospital in Cape Town.

Before I came to live in America, I was seen by Professor Carwile Le Roy, a wonderful doctor who confirmed my diagnosis. He and I were on television for the Arthritis Foundation Telethon.

More than twenty years ago I started taking an antibiotic which cleared up all my infected fingers. My fingers are all bent but very usable. My passion is gardening and, of course, helping people to be positive no matter what their problems are.

~ Update 06-19-09 ~

I've learned many things over the years and the most important is having a positive attitude no matter what incurable affliction one has. Give your best and you will receive the best available. Pain is part of life so get used to it and try to keep a sense of humor as much as you are able.

My family and I never thought it was possible for me to live this long and enjoy each day as I do. I keep very busy helping others to cope with their problems, then I retire to my nest exhausted, but happy. Not a wasted day!

I take my medicines as just part of my day and when the going is rough, I pop a pill and rest for awhile.

These thirty-nine years have been a long journey especially since my husband died in 1989 on a golf course. I would guess he now plays golf every day!

I am English but recently became an American for which I am grateful. We had visited so many countries, but this one is the best!

Have faith for I believe God is in control of everything.

To Contact the Author
Dorothy
Email: ralstondj@verizon.net
Old Email Prefix: ralstondottie
Story edited 06-09-08 JTD
Story posted 10-03-08 SLE
Story update edited 05-05-09 JTD
Story update posted 05-12-09 SLE
Story updated edited 06-19-09 JTD
Story update posted 05-30-09 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Antibiotics and Scleroderma
CREST Syndrome
CREST Stories
Digital Ulcers
Digital Ulcer Stories
Support Groups (Worldwide)
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
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 Dot: Mother of Morphea/Linear 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