My name is Barbara and I’m an RPV Patient Panelist who’s overcoming Pulmonary Hypertension
Hello. My name is Barbara Thompson. I was diagnosed with pulmonary hypertension in December of 2002. When I first found out about Rare Patient Voice, well, I felt like well, maybe somebody really values what I think about pulmonary hypertension and how to raise awareness and let other people know about this disease. It’s terribly important to me as my mother-in-law passed from this disease as did my sister-in-law. In the meantime, I have referred lots of people to Rare Patient Voice because we do need a voice with rare diseases. It’s nice to have a support system that can help me pay for the drugs. They’re terribly expensive. What is it like living with my condition? It’s a new normal. It’s difficult to live with. Take day-to-day or actually, you know, sometimes it’s hour to hour. I have learned to pace myself and some days when I do feel really, really well I will overextend myself and end up in bed for the next three days.
