Henley Crouchen joined Scleroderma in 1985, so he is one of our longest serving members. Henley is very active in our organisation having been a committee member for many years as well as serving as President from 2003 until 2005. Henley lives at Ipswich but never hesitates to drive into the office to help in any way he can. We consider Henley one of our most valuable members and his philosophy on life with Scleroderma is an inspiration to us all.
"To those who have not met me I am an English-Australian who immigrated to Australia at the end of 1964 after joining the Australian Air Force in London. After a stint in the Air Force I later worked as a fitter at the Ipswich Railway Workshops.
My troubles began in 1980 when at 44 years of age I noticed my fingers swelling and the tightening of the skin around my neck and under my armpits. I couldn't lift my arms above my head and had aches and pains in my legs whilst walking to work.
My GP who didn't know what my problem was, referred me to a specialist.
Scleroderma was diagnosed straight away subject to a skin biopsy. He already had a patient with the condition and for the next 18 years the advice was "no cure, no treatment, come back in 4 - 6 months". I didn't mind returning for my visits as it was a chance to educate the medical students and interns. He would have them attempt to diagnose me whilst imparting information about Scleroderma. They were diagnosing cases a lot quicker at the end of this period so I suppose it helped spread the word about Scleroderma.
I was then advised by a locum that I needn't come any more.
The first year I had Scleroderma I tried to find as much information as I could from the medical books in the library and bookstores with no luck. "Let's Get Well" by Adelle Davis, an American Nutritionist, had a small reference to it. Her advise was a lot of vitamins and minerals which I followed for about a year. I don't know if it helped, but my Scleroderma never progressed quickly. It has had a very slow progression mainly affecting my hands which have hardened and curled. Ulcers are always a problem. Problems with my feet began in 1989. The fatty tissue seemed to have gone from the soles of my feet and large corns and callouses appeared. My feet hurt badly in the heavy safety boots that I was required to wear to work. and working itself became more difficult with the curling of my hands.
I've since learned that the vibrations from pneumatic tools can cause more skin hardening. I decided to retire on the invalid pension. I wear insoles and joggers to protect my feet and have found that the condition has not worsened, in fact the skin has started to ease.
So here I am at 71 years old after 27 years. I have a little reflux now and then, solved with a "Quickease". My stomach is sluggish and windy but being on my own, I can live with that. I have a yearly echocardiogram and lung volume test (recommended as I was a smoker for nearly 50 years) which are 0K so far. I will have to see my doctor soon -as I am currently experiencing cold feet and cramps in my lower legs which concerns me.
I HAVE NEVER HAD ANY TREATMENT OR PRESCRIPTIONS THOUGH I FEEL A PHYSIO MIGHT HAVE HELPED WITH MY HANDS IN THE EARLY STAGES. TREATMENT AND DIAGNOSIS HAS PROGRESSED IN THE LAST 26 YEARS AND I'M SURE WE'RE NOT FAR FROM FINDING EVEN BETTER ANSWERS, ESPECIALLY THROUGH MORE STUDIES INTO GENETICS AS WELL AS PROFESSOR RAJENY THOMAS' RESEARCH, AT THE PRINCESS ALEXANDRA HOSPITAL.
Finally, I read years ago " If you can't alter a fact, accept it', and that's my motto."