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Jenny: Severe CREST Syndrome and Limited Scleroderma

The words the doctor spoke that day kept ringing in my head, "Some people have died from this disease."

Kaleidoscope for Jenny by Shelley Ensz I was just diagnosed with severe CREST Syndrome one week ago. Since the diagnosis, I have started to educate myself about scleroderma in order to understand what I need to do to help control and manage my condition.

The first few days I projected a lot of different outcomes, including my death (I hope this is normal.). The words the doctor spoke that day kept ringing in my head, “Some people have died from this disease.” The ringing did not last very long once I started thinking about my twelve-year-old son, who I have raised on my own for the past eight years.

This disease has taken part of my right index finger and nearly the right middle finger. The digital ulcers are bad and very painful. The first episode, eight years ago, was never linked to scleroderma. My symptoms started to appear over ten years ago, but I was only recently diagnosed. I was referred to many different doctors for complaints over the years. None of them ever put it all together.

I have all five CREST symptoms. The good news is that the battery of tests and x-rays show no internal organ involvement at this time. As a runner who completed one full marathon and recently the Disney half, it is so hard for me to believe I have this chronic lifelong disease.

~ Update - March 2002 ~

It has been one year since my diagnosis of severe CREST syndrome with limited scleroderma. I have skin thickening on the hands, facial area, and feet. I would like to share my successes and my setbacks. I have learned so much and become more educated about this disease.

This statement sounds funny because I consider myself a very educated woman. I hold both a B.S. and an M.S. in Management Information Systems, but that is not the kind of education that helped me through the past year. This disease is so individualized and can rear its head when you least expect it. The best education to help me has come from all of you and from my doctors, who have strived to find the best ways possible to manage my symptoms.

Now I am learning how to prevent Raynaud's phenomenon attacks, not attacks from computer viruses. I am fighting fatigue when I just want to sleep all day, not a slow and poor-performing network. I am adjusting my diet to prevent painful and erosive acid reflux (heartburn), not fixing the abnormal termination of a computer program.

I am still a runner. It is a personal hobby that brings me great joy, but this disease has taken some of that away. I completed my last marathon in January. On the advice of my doctors, I will not continue to run such long distances. I will, however, continue moderate exercise and a positive attitude. I pray every day that a cure is found and the suffering ends. I read your stories and hear your voices and this, in itself, provides strength.

To Contact the Author

Email: [email protected]
Story posted 3-17-01
Story update posted 3-11-02
Story edited 7-17-03 SLE
Story edited VH1: JTD 8-11-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Acid Reflux (Heartburn)
Difficult Diagnosis
CREST Syndrome
Digital Ulcers
Limited Scleroderma
Preventing Raynaud's
Voices of Scleroderma Volume 1

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!

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 Jenny H: Eosinophilic Fasciitis

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