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.
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.
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
Pulmonary Hypertension (PH)
Shortness of Breath
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!
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