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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Jim White, MD Transcript

Nov 3, 2016

James White, MD, PhD from University Rochester Medical Center talks about his fifteen year career treating pulmonary hypertension, the importance of PH awareness to the medical community and his gratitude to all patients who participate in clinical research studies. 

My name is Jim White. I am a physician and scientists at the University of Rochester in Rochester New York. This is what I have been doing as a career for 15 years now. I take care of patients with pulmonary hypertension. It’s the only group of patients I see. I run a small basic science lab where we're trying to better understand what happens to the blood vessels, why they get diseased and what treatments might be better and I have a large clinical research program.

While I have been taking care of patients with this disease I have seen therapies that change people's lives. I’ve seen therapies get easier. I've seen therapies that impact people's lives more for the better and less for the bad. I have seen fewer people die and more people live and not just live but live well and live aware.

One of the greatest struggles we have despite massive education efforts, we still struggle with many well-intentioned cardiology and pulmonary physicians making one of two mistakes. One, either they are not attending at all to the fact that pulmonary hypertension might exist. Or, I think an equally problematic difficulty in medicine, is when physicians with some awareness but little experience decide that they are competent and capable for taking care of patients who really have a unique problem.

So, I think that building awareness is twofold. One is: are you even aware that pulmonary hypertension as a potential cause of breathlessness? And once you are aware that that is the problem: are you aware that referral to somebody who really knows what they're doing is likely to make a difference for that patient? I think that those are two pieces of awareness and both of them need to get articulated. It's great that you've ordered an echo to help evaluate whether your patient’s breathlessness might be related to pulmonary hypertension, but if you misuse that information, the patient’s not any better off.

I'm hopeful that in the next two or three years we’ll get smarter in using the therapies that we have to make people's lives simpler and more enjoyable. And as we move in the five to eight year time frame, I'm hopeful that we’ll finally get therapies that come closer to a cure without being as debilitating as the parenteral prostacyclins are.

 One of the things that I want to say is that the patients who are willing to give of themselves and of their families and their friends to participate in research, you are the reason the change is happening. That time that you're willing to give and your participation in answering the phone calls and filling out the forms and doing the extra hallway walk and giving the extra blood, you’re the reason that there's promise in the next five years, eight years, ten years. You will be the driver for change and so I am grateful.

 My name is Jim White and I’m aware that I’m rare!

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