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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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Yon Sung, MD - phaware® interview 280

Sep 10, 2019

Yon Sung, MD is a Clinical Assistant Professor of Pulmonary & Critical Care at Stanford University School of Medicine and specializes in the care of pulmonary hypertension patients. She also serves as the Director of Community Outreach for the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford and in this position, has the goal of increasing awareness of PH and providing clinical support and education to clinicians and patients alike. In this episode, she discusses the 19th Annual Race Against PH 5K, taking place at Stanford on November 3rd, 2019.

My name is Yon Sung. I'm a pulmonologist and one of the pulmonary hypertension specialists at Stanford. I'm also the Director of Community Outreach at the Vera Moulton Wall Center for pulmonary vascular disease.

I would say we're a comprehensive center for learning about and treating pulmonary vascular disease and in particular pulmonary hypertension. At the Vera Moulton Wall Center, our mission is to promote research in pulmonary vascular disease, specifically pulmonary hypertension, but also spreading education about this disease and, of course, caring for patients.

I think I've gotten really good at developing our own research initiatives and developing our clinical practices within Stanford and within our own little kind of bubble, but also realizing that there was a huge opportunity for us to connect to lots of other entities in the community. For us to connect with other community providers, we're also co-managing our pulmonary hypertension patients with us. Also, to connect with patients on a different level as opposed to just in the office one-on-one or when we see them in the hospital. [We] try to get a sense of what's going on with them outside of our interaction as a doctor-patient relationship kind of thing. Then, also just to the broader community in terms of raising awareness and educating people on what this disease is.

How I got into pulmonary was honestly mostly great teachers when I was a medicine resident and they just made lung disease and pulmonary very interesting for me. I came to Stanford for my pulmonary critical care fellowship. My first year of fellowship I was working with Dr. Mark Nichols, who is our division chief and did a lot of research in pulmonary hypertension. We had been working on a clinical rotation together and he had introduced me to work that they were doing in their lab and invited me to come do some research there and that's pretty much what got the ball rolling on that.

I think before that, I didn't know much about pulmonary hypertension. I didn't have any particular interest in it necessarily, but that's how I got in. I worked in a lab for a bunch of years, looking at different animal models for pulmonary hypertension, trying to understand how inflammation was involved in the development of PH. From that I got connected into the clinical practice of it. I've been treating patients again, since 2011. For me, after a few years of doing the lab research, I realized that wasn't really for me and where my passion was and where I felt like my skills were best used were interacting and treating patients. So, I converted over to doing that a bunch of years ago and certainly am much happier in that realm of pulmonary vascular disease.

I think part of what makes us special is I think we really integrate many of the different aspects involved in pulmonary vascular disease into a very cohesive team. You know, on a daily basis I'm interacting with people who obviously take care of patients all day long like myself, and all of our nurse practitioners in our office who are all helping to take care of patients on a daily basis. What's also special is that we on a day-to-day basis interact with basic science researchers who are really trying to understand the pathogenesis, that's how we get to this disease. Then also clinical researchers who are helping us run clinical trials to try to find new therapies for this disease. I think what's also special is that we have a very tight connection to the pediatric side of this, so we also get that different perspective, about how the disease is different and certainly how treating patients is different on that side of it.

Coming up this November is our biggest fundraising event of the year. It is our 19th annual Race Again Pulmonary Hypertension. It will be November 3rd on the Stanford campus starting at nine o'clock in the morning. We always like to remind people that it's actually the transition out of daylight savings time. Everyone gets an extra hour of sleep so there's no reason to not be able to come. It was started back by friends and family of Patty Ewing who was a patient, and it's since grown to be one of the largest and longest running PH events in the country. The entire PH staff shows up for the most part. Of course, somebody always has to be on call to see the patients. But for the most part, we all show up and I would say most of us end up running or walking the race.

One of the great things about this race is that we do see our patients there and their families and we have patients who come every year. We can see from year to year, they're transition of how they're dealing with this disease. I can think of certainly a few patients who come to this terrible diagnosis, they're feeling horrible, they can hardly do anything. We get them on some therapies that are really effective and then the next year they're able to walk the entire 5K and do the entire race.

And as the years go on, as we know this is a progressive disease and for almost everybody it gets worse over time. Then we see that where they transition and maybe they can just show up and be with their family. Then for those of our patients who then go on to get a transplant, that is always amazing to see because you know, we on the pulmonary hypertension side care for them when they're at their end stage, or their end-stage heart failure. They [some patients] get their transplant. I know we pass them off to the transplant team and we hardly see them anymore.

It is really a wonderful opportunity to see a few of these patients we’ve had a come to the race. I remember one young patient who was the following year able to run the race after she had a transplant and that was really incredible.

This year we hope to be again our biggest event yet. We'd love for anybody and everybody to come out. Again, on November 3rd on the Stanford University campus starting at nine o'clock in the morning. To register or if you're interested in volunteering or participating in other ways, all the information is at www.raceagainstph.org.

My name is Yon Sung and I'm aware that I'm rare.

Register for the 19th Annual Race Against PH 5K: med.stanford.edu/raceagainstph

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