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Carol C: CREST Syndrome

Scleroderma has not robbed me of a fulfilling career.

Black Eyed Susan for Carol by Shelley Ensz For as long as I can remember, I always felt cold. I was the child at school who sat at the back of the class, not because I was inattentive, but because that was often closest to the old hot water panel that warmed the classroom. By the time I was thirteen, I was hiding my stiff, white, and painful hands in gloves and in pockets. Shortly after this, I developed the same symptoms in my feet and at times, walking became difficult and painful.

At nineteen, I was on all sorts of medication to relieve symptoms of what was finally diagnosed as Raynaud's. My feet suffered so badly that I underwent a chemical sympathectomy to alleviate the pain and problems with walking. This was successful in the short term. Thankfully, the Raynaud's phenomenon in my feet has gradually improved over the years.

In 1992, at age thirty, I gave birth to my second child, Max. With Raynaud's phenomenon still a problem, I was undergoing a treatment that required a drug to be intravenously fed into each hand over a period of weeks. This treatment was supposed to keep the Raynaud's phenomenon attacks at bay during the cold months. It was during one of these treatments that a very young and observant doctor noticed the red spots (telangiectasias) on my hands and the contraction of a finger. The Raynaud's phenomenon, with all its problems, soon took a backseat as a rheumatologist told me that blood tests revealed that I had, in fact, a very rare disease called scleroderma.

Thinking she would follow with something like, "And if you take these tablets, those unsightly spots will go away, no big deal really." I was unprepared for what actually followed when she said, "It is an incurable disease that little is known about with an uncertain future, given the possible directions the disease could take." Tests followed and, finally it was revealed that for me, the prognosis was good. I had the CREST variant.

It is now ten years since I was diagnosed and while I present every one of C, R, E, S, and T of CREST, I am managing the disease. I have taken medication since my diagnosis and this has worked well. I have problems with gastroesophageal reflux, but antacids and diet modification keep that under control. My Raynaud's phenomenon is still a bother, and the tight, glossy skin does nothing to enhance the beauty of my corpse-like hands.

My daughter, who is fifteen, and my son, who is nine, always hold my hands when we are out — partly because they love me, but more because they know that they can use their body heat to keep an attack at bay for me. The only problem I have developed recently has been debilitating migraines that a neurologist suspects may be triggered like Raynaud's phenomenon, by temperature change. A migraine attack will present all the signs of a stroke including memory loss, visual disturbance, loss of speech, loss of feeling down one side, and, of course, the pain that follows.

I have worked full time as a senior secondary school teacher since I was twenty (I am now forty). I have only taken short breaks to have my children. Scleroderma and Raynaud's phenomenon have not robbed me of a fulfilling career. Over the years, my students have been astonished by my hands, particularly during a Raynaud's phenomenon attack when I cannot hold a piece of chalk to write on the board or a pen to mark the roll.

Necessity has helped me develop some good strategies: classrooms that always capture the morning sun as they are a little warmer; heat bags of all types; big coats with warm pockets; and teaching with computers where the warmth generated from top of the processing unit can be very effective. I have students who readily take my roll, write on the board for me, and turn the heating on in a classroom even before turning on a light. Most importantly, I have had the chance to educate students not only about Raynaud's phenomenon and scleroderma, but also about being different, and accepting it.

To Contact the Author

New email address needed 08-06-09 SLE
Old Email Prefix: c_curtin
Old: [email protected]
Story posted 8-1-01
Story edited V1: JTD 8-5-03
Story posted V1 8-5-03
New email posted 8-16-04 SLE

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Gastroesophageal Reflux

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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!

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

Go to Carol F: CREST Syndrome

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