OUR JOURNEYS

Patient story

Barbara M. Thomas

I was diagnosed with Scleroderma in Hartford, CT in 1984. Two years ago I encountered a battle with pneumonia and underwent special treatment at the UConn Health Care Center in Farmington, CT. I am now on several different medications to keep water out of my lungs and on oxygen full time. Blood work is done on me monthly. I now have hardening of the heart and fibrosis of my lungs. I am 76 years old and not eligible for a lung or heart transplant. I keep a good attitude and am not depressed. If it weren’t for my husband Peter keeping track of my meds and doctors appointments and all the household chores, I wouldn’t be here.

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.