I am 54 years old, British but living in The Netherlands for 26 years.
I'm married with two grown up kids. I have Localised Scleroderma. A phrase
I only learned about a few days ago would you believe.
I am writing because I want to give parents hope. My Scleroderma began
when I was 8 years old in the classic way, my parents noticing strange
marks on my right shoulder.
I was taken to specialists who gave me ultra violet treatment, told my
parents that should keep my arm out of the sun, not move it too much and
certainly not go swimming. Consequently I had a virtually "dead" arm. The
finger tendons did not work and I could hardly move my arm. My fingers
fused together and because of the very poor cirulation my hand and arm
used to ache terrribly.
An old friend of my mother, a physiotherapist who was a senior nurse and
at 65 requalified. She Decided to take me in hand and gave me massages
with oils, excersises and made me use my arm as much as possible. I had an
old chest expander, which I had to hang on the handle of a door and with
my right hand I would have to exercise every day.
Slowly my arm came back to life. I know that I was lucky as I have
localised scleroderma. I was very self concious of my arm and it is
probably only now that I have just began to wear clothes without sleeves.
My arm is thin and has the classic scleroderma markings but what the hell
it works. It never seemed to put off boyfriends who didn't care.
So Parents out there, Scleroderma is a scary disease but with love and
good treatment it does not have to inhibit your children.
Make them move, excercise to the best of their ability. It is wonderful
that there are organisations like this to give support. When I was growing
up there was nothing. I still do not personally know anyone else who has
The very best to all of you.