Patient Story

Diana Curtis

I am Diana Curtis, 54 years old with PH secondary to interstitial lung damage secondary to scleroderma. I was diagnosed with the scleroderma about three years ago but had some CREST symptoms as long ago as 12 years with my esophagus now it is full blown and progressing rapidly. I was diagnosed with PH one year ago this month. It has progressed to class 4 and I am on Flolan along with Revatio and lots of diuretics, digoxin and pain meds for the scleroderma. I take fourteen pills in the morning…a few more about 2:00 and then ten at dinner time. It is very hard to type this with my painful crooked fingers but I fell it is important to share my story with others so they can be encouraged.
I love Jesus and was a church secretary for fifteen years at our church. I retired in December of 2008 and went on Social Security Disability. That is something I should have done months before I did but I just didn't want to "give in".

I do not drive anymore and can only walk around in the house with my oxygen on 5 l/m so I cannot walk to the car or from the car to a store or anything like that. I have a wheelchair and a jazzy power chair and someone goes with me everywhere I go outside the house. My husband is a truck driver and owns his own truck and gets his own loads and is gone quite a bit so I am at home on my own in the afternoons. I have caretakers in the mornings for Flolan stuff and giving me a shower which I cannot do on my own any more. This all has brought my husband and I closer together than we have ever been. The Lord has been by my side holding me up through all my down times and good times as well.

I am so thankful for everyone who has encouraged me and filled me with helpful info on the PH web site.

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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.