Ron's Story

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I feel that I am lucky because I have only had scleroderma since the fall of 1997. I have worked as a carpenter and in warehouses and have had my own renovation business. I always tried to keep fit and was 46 when the symptoms started. In Oct that year we moved from a rented townhouse to one we had bought. There were a lot of boxes of books etc. and a lot of stairs. (At the same time we sold a house and I was in a new job and a new city, all within 5 months. There is some speculation about stress as a cause or catalyst.) I felt stiff and sore after but blamed it on the strain of the move. Seven or eight weeks later I was even more stiff and achy and finally went to see the doctor.

After months of tests they finally decided I had Eosinophylic Fasciitis, which makes the fascia throughout the body tight and inflexible. My legs and hands swelled up and the skin looked as if it was inflated like a balloon. Every little touch on my body was painful and I usually had a headache. At one point almost my entire skin was affected, thick and shiny. My hands wouldn't close (I was always dropping change and small things) or open (I couldn't straighten my fingers -they stayed 'clawlike'). I lost range of motion in many of my joints and was in constant pain. At the rate I was going I thought I had maybe a year or two left. In August my GP noticed the white blotches on my arms and legs and sent me to a dermatologist who diagnosed it as scleroderma. It was a struggle to get in or out of a vehicle and just walking was a trial. I had to take sick leave from work in Oct/98 barely a year from the onset.

It was Nov/98 when I first started the Minocyline treatment and within two months I noticed there was no further progression of the disease. In another month, there was less itching and I felt that I had more energy. Since then I have gotten continually better and my skin has become slowly more normal. I have the wrinkles back on my face and am almost pain free. I am still quite weak as I lost a lot of my muscle mass and have little endurance.

I have a regimen of exercises, tailored to my needs, (I am supposed to do them regularly) that I got from the physiotherapy dept at my hospital; the same therapist recommended a "hypoallergenic, perfume-free, lanolin-free, non-greasy" moisturizing cream that has eased the itching and helped with the flaking. Others just use a moisturizing lotion and say that helps. Another thing that relieves itching for me is aloe vera. I keep a plant and cut 1 to 2 inch segments at a time off of the lower leaves, cut off the edges and then split the remaining piece and apply it directly on my skin.

I did not suffer any of the symptoms of Raynaud's. Again I feel very lucky as I don't get so terribly cold and the skin on my fingers and toes has remained nearly normal. I have had some skin color changes -- mostly in the form of white blotches which looked like severe frostbite and were very tender at first and also a few darker blotches. A lot of that has disappeared and except for my lower legs it looks more normal although when you feel it you can tell it is not as pliable as normal skin. My lower legs are still hard and tight and shiny, but that part continues to shrink back. The hair on my legs and arms disappeared when the skin was very tight but as the skin normalizes, the hair comes back. I was also on Prednisone for a while which really helped with the pain and maybe the itching.

I noticed my mouth was affected when I would try to eat. I couldn't open wide enough to take a bite of a banana. I was down to less than ¾ inch between my upper and lower front teeth. Dental work was impossible. I now can measure 1¼ inches between my front teeth.

I hope I will be back to work within a year, as I seem to be able to concentrate and reason better. The mental disability was as frightening as the physical part. There were times when I would lose concentration and forget what I was doing and I couldn't do one thing sometimes let alone more than one thing at a time.

I will update this story as things improve.