Pat

My name is Pat. I was diagnosed with Scleroderma in 1976!!!! At that time was working in the Emergency Room at Kaiser Hayward as a Registered Nurse. My hands would turn blue, get sweaty, but, I thought it was just O.K. Going to a freezer to get things out really blanched my fingers. One of the doctors noticed my hands and suggested that I see a Rheumatologist, which I did. Her diagnosis was ¡°Early Scleroderma¡± At that time I felt that I was O.K. and could cope. I think I was in denial. Around 1999 or so a friend told me about the article in the Fremont Argus about Scleroderma. I t mentioned the Support group. I was hesitant to join, but I did. In 2000 my Pulmonary doctor told me to start using oxygen when I exercised, by then I had interstitial lung disease. So I started using the oxygen when I used my treadmill. I was still working and going to school. In 2002 my husband and I went to Lake Tahoe for the weekend. We DID NOT take the oxygen along. While there I became very ill, couldn¡¯t think straight, my hands were getting discolored. So we came back to the Bay Area. That was on a Sunday, the next day I thought I was having an asthma attack or had bronchitis (ever the nurse). When I saw the doctor he immediately admitted me to the hospital, I had pneumonia. I was put on a ventilator for a week, my diagnosis was pneumonia and ARDS (Acute Respiratory Distress Syndrome) I know that I am lucky to have survived that episode. My husband was and is very attentive. My husband, friends, family and the Scleroderma Support Group prayed and gave positive thoughts for me and I will be forever grateful for their support. I do take D-Penicillin and other medications for hypertension. I did a course of Cytoxan for 1 year. At present my Pulmonologist and Rheumatologist say I am stable I have now retired from working as a Registered Nurse and am on disability. I am using oxygen about 12-24 hours a day.

 

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Newsflash

Researchers at Princeton University used DNA microarrays to characterize gene expression patterns in skin biopsies from individuals with a diagnosis of systemic sclerosis with diffuse scleroderma.