My father was diagnosed in the early 1980's with systemic scleroderma. Watching him suffer the way he did was terrible.
His skin was so tight he could not bear to have anyone or anything touch him. He was very moody, sometimes unbearably. The skin on his face tightened so much that it made him look very young. His lips shrunk and his nose became pointy to the extent we called it the bird disease, as that is what he began to look like.
He was admitted to the Royal Hobart Hospital in Tasmania for chemotherapy which made him worse. In July 1990, he met his natural mother for the first time (he was adopted at birth). She came to Tasmania and spent time with him. Two weeks later he was admitted to the Ulverstone Hospital which is what he wanted as he obviously knew that his time was coming to an end.
On July 21, 1990, he was sitting in his hospital bed and asked the patient next to him for the paper. He got out of bed to get the paper and died of a massive hemorrhage.
Not long after the death of my father, one of our family friends who lived up the road in the farming community of North Motton, was diagnosed with the same condition. She also has since died.
My brother at the age of sixteen years old was also diagnosed with the same disease that claimed his father. He has had it now for fourteen years and, only this week, has started becoming very ill. He is now thirty years old, a single parent with two children he adores. He broke down on my mother saying that he is very frightened of what is going to happen. His skin is tightening, his hands and feet are swollen and he is having trouble breathing.
If this was the first time we had experienced this, we, as a family, would not be so distraught about it as we would not have a clue what we are up against but it has happened to us twice before so we know what to expect. We ask ourselves is this disease hereditary or is it due to the sprays used by our father on the farm.
As children we would stand in the potato paddock while the crop duster flew over us spraying chemicals onto the potatoes. We would be standing only meters from the spray.
I have a blood test for this disease every twelve months as I feel the cold and my feet especially get very cold. So far so good as all tests have been negative. I just wish that it had been the same for my father, friend and brother.
Story edited 10-03-06 JTD
Story posted 10-26-06 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
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