The Scleroderma Association of NSW Inc. cannot offer direct advice on treatment or available therapies. It is up to each patient to make all relevant health decisionsIn consultation with their own doctor or health professional.
A person with scleroderma
needs a great deal of support, both physical and emotional.
Some of the areas are detailed below.
He/she will generally try to keep his/her independence and may be reluctant to ask for help.
Exposure to cold and stress can adversely affect the condition.
A person who is experiencing difficulty with swallowing and reflux may be reluctant to dine in public.
A person with scleroderma may feel fatigued most of the time and may not be able to accomplish as much as before.
"I have Diffuse Stage 2 Scleroderma. I was diagnosed in 1994, but am sure I was suffering from some of the symptoms in the early 80's. I remember going to the doctor several times and telling him that my hands kept swelling, but all to no avail.
It wasn't until December 1993 when my hands were terribly swollen and "on
fire" that I managed to get some positive reaction. Therein followed tests,
tests and more tests. Rheumatoligist, Neurologist, and Dermatologist -
finally I was waiting for the Psychiatrist !!
I remember vividly the final visit with my first Specialist - he virtually
told me to go home and get on with my life! I think the shocked look on my
face prompted his suggestion that perhaps I could seek a second opinion ...
if I wanted to. ( I should point out to his defence that at this stage my
fingers had not started "curling " ). I grabbed this alternative with both
hands and have been with my terrific Specialist for seven and a half years
now.
The first visit with her brought the first mention of the "S" word, and three months further down the track this diagnosis was confirmed. I didn't know whether to break out the tissues, the champagne, or both!! I was so happy that finally someone had agreed that yes I did have something wrong with me and it had a name."
Editors Note: Thanks
Christine, I think there are many of us out there that have been through a
similar ordeal.
Dear Patricia,
just a few lines for discussion at Support meetings my wife Jeanette is a long term Scleroderma Sufferer, she has many problems as do many others. Shortage of Specialist doctors are a very large problem. more so when the patient has 150 km+ to travel.
Jeanette was very pleased when Dr M* L* (formally on the medical Advisory Panel) commenced visiting Dubbo on a fortnightly basis. It makes such a difference when a doctor really knows how Scleroderma can be treated.
Encouraging more doctors to visit country areas would help many many patients.
Many thanks for your service etc.
Don S*
The Scleroderma Association of NSW Inc. cannot offer direct advice on treatment or available therapies. It is up to each patient to make all relevant health decisionsIn consultation with their own doctor or health professional.
Updated Updated Tuesday, 08. April 2008
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