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Jackie: Scleroderma, CREST, and Pulmonary Hypertension

"I enjoy my computer as you are all my world."

For Juanita by Shelley Ensz I was diagnosed with CREST Syndrome over twenty years ago, and if my sister did not have the same symptoms as me, I never would have known about scleroderma.

We were identical twins, and she died in 1988 from kidney failure. We had the same genes; we both started with Raynaud's phenomenon. By the time my sister was diagnosed, she was pretty involved with it. Her organs failed fast.

As for me, at first my hands got worse, although I am lucky that I have not had digital ulcers. I had dry skin,difficulty swallowing, and I had shortness of breath at the time.

It was not until 1997 that I was diagnosed with pulmonary hypertension (PH). I had an episode in the hospital yard, and they rushed me right into the emergency room. The next day, they transported me to a hospital in Atlanta, Georgia, for a heart catheter. They discovered the PH at that time.

I am on oxygen twenty-four/seven. I have no energy, and my breathing has gotten worse. I live one day at a time because I never know how I will feel when I get up. I have a very good friend who helps me a lot. My family tells me not to overdo—or do, period. I cook, and go to the store and to church.

Things are not always easy, but at least I am here to write to all of you. I enjoy my computer as you are my entire world.

To Contact the Author

New email address needed 09-14-06 SLE
Old Email Prefix: jac1238081
Story posted 5-28-01
Story edited VH1: JTD 8-11-03

Story Artist: Shelley Ensz

Story Editor V1: Judith Devlin
CREST Syndrome
Difficulty Swallowing
Digital Ulcers
Kidney Failure
Pulmonary Hypertension (PH)
Shortness of Breath
Voices of Scleroderma Volume 1

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 Jackie J: Localized Scleroderma

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