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Debby B: Systemic Sclerosis

To say that experience was an eye opener, is a major understatement.

Flowers for Debby by Shelley Ensz I was thirty-eight when I was diagnosed with scleroderma. That was two years ago, and since then my life has changed dramatically.

At the end of 1999, I began having unexplained aches and fatigue, as well as swelling and numbness in my hands. I suffer from Raynaud's, even though I live in a southern state where it is always warm.

My family has a history of Autoimmune diseases, from rheumatoid arthritis to lupus, so I thought my Raynaud's was related to arthritis. My aunt had been diagnosed with lupus at a well-known clinic in our state, so I made an appointment there.

After a week of tests and a return trip a month later, I was given the diagnosis of scleroderma. The awful thing is, my first thought was, "Whew, at least it is not lupus." Little did I know. Once I realized what scleroderma involved, I was devastated.

Through a friend I found a wonderful rheumatologist who I now see every month. In the fall of 2000, I developed severe hypertension and my rheumatologist sent me to a nephrologist. He put me on medication, but my blood pressure stubbornly remained high.

In July 2001, everything came to a head. I was suffering from what I thought was a bad summer cold or sinus infection. I saw my family doctor, who prescribed an antibiotic and bed rest. Several days later I was worse. I had trouble breathing, bad headaches, a rapid heart beat, and nausea.

Finally, when I could barely get a breath, my husband rushed me to the hospital. My blood pressure when I arrived in the emergency room was 250/150. The doctors told my husband that I would have died if we had waited just five more minutes to come in. I had suffered congestive heart failure brought on by a renal hypertensive crisis. I spent three days in the intensive care unit and a week in the hospital until the doctors found the right combination of blood pressure medications.

To say that experience was an eye opener would be a major understatement. I have learned to take every cough, hive and symptom seriously. I bless every day that I am able to be up and around, walking, shopping for groceries, driving myself, taking care of our home, and all the little things we normally take for granted.

I do not know what is ahead of me, but who does? I try to stay positive and optimistic, otherwise my loved ones, my husband and family, just feel more helpless.

I pray for a cure in the very near future. I am lucky. I have a wonderfully supportive and understanding husband, a warm and loving family, and an excellent team of doctors who take extremely good care of me.

I cannot stress enough the importance of finding compassionate physicians who are knowledgeable about scleroderma. I am not giving up. I plan on being around for a long time.

To Contact the Author

Email: [email protected]
Story edited 10-31-02
Story posted 11-8-02
Vol. 2 matching edits 01-20-05 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Autoimmune Diseases
Congestive Heart Failure
Renal Hypertensive
Rheumatoid Arthritis
PDF Brochure: What is Scleroderma?
This story is featured in the book Voices of Scleroderma Volume 2

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!

Go to Deborah Peck: Diffuse Systemic Sclerosis

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)