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Kelly: CREST (Limited Cutaneous Systemic Sclerosis)

I have had thickened fingers and Raynaud's since I was a teenager.

My name is Kelly, and I am a fifty-three-year-old web developer and mother of two daughters. Two months ago, I was diagnosed with CREST (limited cutaneous systemic sclerosis - lcSSc). I feel lucky. As I write this, my only obvious symptom is a finger which is unusually sensitive to cold due to the fibrosis.

I have been diagnosed early. At least, I think I have been diagnosed early. I have had thickened fingers and Raynaud's since I was a teenager. After I reached menopause in 2008, the Raynaud's, which had been a once or twice a year phenomenon, suddenly began to appear once or twice a week. At that point I was annoyed, but not yet worried because the condition manifested itself as a couple of white fingers which would quickly return to normal as soon as I warmed them.

The real problem started when I woke up on October 5, 2009. My left middle finger tip was purple. At first, I thought I had triggered a more serious Raynaud's reaction by sleeping on my hand or pressing my hand against the wall. But warming did not improve the color.

My primary care physician was out of the office that day, but his associate took my history, and prescribed medication to improve circulation. In some ways, the medication seemed to work and completely stopped the attacks of Raynaud's, but my left middle finger tip remained difficult to heat. Over a period of weeks, the finger tip seemed to shrink and would turn purple with very little provocation. Warming the finger tip during this time caused it to feel very hot, almost as if it were being scalded.

Then, on November 2, as I was driving to work, I discovered I could not extend my finger without the skin feeling very tight. That same day, my primary care physician tentatively diagnosed my problem as "scleroderma" and referred me to a rheumatologist. I was fortunate to get an appointment within three days.

At first, the rheumatologist hinted that he felt my primary care physician was overreacting. After all, except for my left middle finger, I looked and felt perfectly healthy. We discussed my family and personal medical history, which included a mother and grandmother with rheumatoid arthritis, a brother with Type I diabetes, my own thirty-five year flirtation with Raynaud's, and my rare solar urticaria. He examined my fingers, growing more and more serious. Eventually, he conceded that my doctor was probably correct and arranged for blood tests.

The anti-centromere antibody test came back positive.

From the standpoint of how lcSSc has impacted my life, I'd say always having to stay warm is the hardest thing. It is almost impossible to stay warm 'all of the time.'

My family and co-workers have been incredibly supportive. Some things I enjoy, like cooking, have become much harder; but with so many people eager to help, I am coming to terms with my apprehensions and settling in for the long battle.

To Contact the Author

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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