I was diagnosed with progressive systemic sclerosis in 1997, when I was fifty-seven. The diagnosis was made at the first visit as the disease was already in an advanced state, and the signs of it were very evident.

The symptoms, that I had ignored for so long, had already been present for many years: thickening of the skin on my abdomen, swelling and pain in my hands with stiffness and ulceration, persistent cough, and general fatigue.

After an acute phase, today (April 2000) it seems that the disease has stabilized for the moment, but the damage has not cleared up. I suffer from marked lung fibrosis, which forces me to use oxygen continuously. I also have reflux esophagitis, mild cardiac involvement, serious visceral involvement and widespread pain. I take both steroids and vasodilator therapy with nifedipine, which has greatly improved the Raynaud's phenomenon in my hands.

This is my story. I would very much like to find other people who find themselves in a similar situation, so that we can take a load off one another's minds.