Cheryl's mom Nancy

Cheryl's Mom Nancy

Ironically, more than 10 years after my mother died from complications from scleroderma, I am researching web sites for my Aunt (no relation) because she has just been diagnosed with scleroderma too. What is the percentage chance that this awful disease would strike twice in the same family?

My mother, Nancy Holmes, was the most courageous person I've ever known. She was diagnosed in the early 1970's - when very little was known about the disease. Many of her early severe symptoms were not visible, so she suffered the indignity of having an invisible disease. After the first major flare she suffered damage to her esophagus, reproductive system, digestive system, and some tightening of her skin. She was only in her early 30's. I was young, so don't remember everything, but do remember she was in a great deal of pain most of the time. The rheumatologist tried a wide variety of arthritis medications, and she was intolerant to many. Fortunately, something clicked and the scleroderma went into remission for quite a while. Unfortunately, rheumatoid and osteo arthritis also set in and did their damage.

The amazing thing about my mother is that she didn't miss a beat. Sure, she had her moments of sadness and depression, but she rarely showed those to my sister and I. She was always at our ballgames, recitals, and concerts - cheering louder than anyone. She was active in PTA and girl scouts, taking on leadership roles that most mothers shied away from as too strenuous and time consuming. She became a teachers aide and enjoyed a long career - mostly working with hearing impaired or developmentally disabled kids - even driving a bus for a while. Nothing got her down for long.

As the years passed and she gradually lost stamina and her pain levels worsened, she had to retire on disability, but still was active in church and girl scouts. She was always ready to go - whether it was shopping, out to lunch, or anything new or interesting.

When she was in her early 50's she had another major scleroderma flare. This one brought her to her knees, even though her pain tolerance was amazing. Aggressive prednisone treatments brought some relief, but also created a whole new set of problems. Early in this part of her life I got married, and she pushed herself far more than she should have, wanting to be a part of an event that was so important to me.

In less than a year she was significantly worse - the anti-inflammatories, prednisone and other drugs had taken their toll in addition to the 3 forms of arthritis. She had a stroke that summer, stayed in the hospital for a week, and was home for a couple of days when she had her second and final stroke. It was obvious that she just didn't have any fight left, and we went along with her wishes not to resuscitate. That day I lost both my mother and my best friend.

It is wonderful to see these stories and read about these courageous people. I'm going to send my Aunt this web address so that she will be able to talk to other scleroderma patients about their experience.

Cheryl - cmatheny@onemain.com