Patient & Caregiver Stories Main Menu

(English) 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

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Joan Elston: Systemic Scleroderma, Sjögren's, and Fibromyalgia

Despite all, I try to remain positive.

Checkers by Shelley Ensz I am sixty-one years of age and live with my husband Bryan in Durban, South Africa.

My health problems go a long way back. Almost twelve years ago, in 1988, I experienced an influenza that I just could not shake off for over a year. I was eventually admitted to hospital and when blood tests did not show up anything sinister, I was diagnosed as having the ME Syndrome or CFIDS as it is also known. I became severely ill and for at least a year I needed the use of a wheelchair.

Two and a half years ago I attended an ME support group meeting where the Celiac condition or gluten intolerance was being discussed, and decided to put myself to a test for the condition.

I soon realized that I was definitely made worse with gluten products and immediately ceased having anything containing flour, oats, barley and rye. The improvement to my health was very noticeable although I was still far from well. I have continued to do without these products in my diet. At least I no longer have need of the wheelchair.

About four years ago I was diagnosed as having Sjögren's Syndrome, Raynaud's Phenomenon and fibromyalgia. Then two years ago I suddenly developed very painful lips and noticed that I could not stretch my mouth without great difficulty.

A rheumatologist diagnosed me as having scleroderma even though blood tests had not revealed anything. I was also experiencing severe problems with my esophagus and tests showed up as dysmotility and severe reflux problems.

I have very few visible signs to indicate that I in fact have scleroderma. My 'draw string' mouth and dry, itchy skin are my only visible signs, but for me the important thing was that I was believed and I also had a name for what was going on with me.

In June 1998 I developed a very severe lung infection, and fibrotic lung disease was diagnosed. It was at this time, that systemic scleroderma was confirmed by a pulmonologist. This year March, my feet and legs swelled up and congestive heart failure was also diagnosed. Apparently this latest problem is connected to the lung disease.

I consume a handful of pills twice a day for diabetes, esophageal problems, neuritis, low thyroid count, Meniere's disease and other problems. I am on a low dose of cortisone for the lung disease and this appears to be helping me considerably at the moment.

But despite all, I try to remain positive, and take each day as it comes. I realize that there are others with Scleroderma who are far worse off than me.

To Contact the Author

Joan Elston
New email address needed 08-22-06 SLE
Old Email Prefix: jelston
Story Posted 1-20-00

Story Artist: Shelley Ensz
Diabetes Stories
Meniere's disease
Sjögren's Syndrome
Raynaud's Phenomenon
Systemic Scleroderma
Go to Joan Stovall: Scleroderma

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.