This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You can listen to the podcast directly, or read it via the transcript that runs just below.
I’m Aware That I’m Rare: Jim White, MD
The phaware™ interview
James White, MD, PhD from University Rochester Medical Center, talks about his 15-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 scientist 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, 10 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!
EVERYBODY HAS A STORY. WHAT’S YOURS?
phaware wants to share your pulmonary hypertension story with their engaged global audience. Whether you are a patient, caregiver, or medical professional, they are enlisting PH community members from across the globe. Visit www.phaware.global/podcast to share your story and to be considered for a future episode.
And learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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