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
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