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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: [email protected]
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

Photo of JudithJudith 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!

Go to Dot: Mother of Morphea/Linear Patient
 
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In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

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