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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 Needed 08-22-06 SLE
Old Email: jelston@worldonline.co.za
Story Posted 1-20-00

Story Artist: Shelley Ensz
LINKS
Diabetes
Diabetes Stories
Esophageal
Fibromyalgia
Meniere's disease
Sjögren's Syndrome
Raynaud's Phenomenon
Systemic Scleroderma
Thyroid
New Personal Stories
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
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