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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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Jacqueline R. Szmuszkovicz, MD Transcript

Feb 24, 2017

 

Dr. Szmuszkovicz works in Los Angeles, CA and specializes in Pediatric Cardiology. She provides comprehensive care to patients with cardiovascular problems. Dr. Szmuszkovicz is affiliated with Children’s Hospital Los Angeles, Hollywood Presbyterian Medical Center and LAC USC Medical Center.

My name is Jackie Szmuszkovicz. I'm a pediatric cardiologist. I work in Los Angeles at Children's Hospital Los Angeles, which is affiliated with the University of Southern California. I came to Children's Hospital Los Angeles in 1997 in September. Since then, I've been part of the PH community.

Pulmonary hypertension and how we take care of children with pulmonary hypertension has changed so much over the course of my career. As I mentioned, I started taking care of kids with PH in 1997. It is totally different now, and in a good way. The fact that we have so many more choices of therapies now than we did 10 years ago gives me tremendous hope that we are going to find a cure for this disease soon. Basic scientists are in the laboratory, thinking about the causes of PH and looking to find the cure. Along with people from all sub-specialties in the medical field, physicians, nurses in turn, all looking at this together. Cardiologists, I'm a cardiologist, neonatologists, who take care of the babies in the ICU, and pulmonologists. It just helps me appreciate how we all look at things a little differently.

I've been caring for kids with pulmonary hypertension for many years. This has been an especially wonderful year for me. I've seen three of my patients graduate from our pediatric program, who've grown up, thrived, carrying this diagnosis of idiopathic pulmonary hypertension. These patients happen to be on intravenous therapy and now have graduated to our adult program. One is in the job interview process. One is going to college. That has made this a really great year for me, to see that happen over the course of my career.

As caregivers, we gain so much strength from our patients and their families. Our pediatric patients, little kids sometimes, and their families are, I think, some of the best advocates for themselves in explaining within the community and educating people about pulmonary hypertension. We've had several of our families, and one comes to mind in particular, that have engaged their whole community… their school community, their neighborhood, their religious community, in helping people to understand what pulmonary hypertension is and why it's important to support research. As someone who cares for children with pulmonary hypertension every day, that inspires me.

I think that especially because this is such a rare disease, the way that we make progress, the way that we learn, the way that we improve our care is by sharing information. Our pediatric specialists, who are spread out over the country and the world, are looking for ways to work together. Everyone wants to work together and is striving toward that. Any tool [like a pediatric PH research app] that could help with that is going to help find the cure.

I do think that there are still many people within pediatrics, who are practicing pediatrics, who don't have awareness of pulmonary hypertension in children. I think for a personal goal, for myself, being a pediatric cardiologist, it's important for me to spread awareness among physicians to think of it. It's not the first thing people think of. It is rare.

I also think that being someone who practices in a teaching hospital, if we, as pediatric cardiologists, strive to bring in the young physicians and introduce them to patients, and let patients tell their story to these people coming into the field. Once they meet one child with pulmonary hypertension, they're not going to forget that experience. The child who then comes in to their emergency room or their practice, wherever they end up, I have great faith that they'll make the diagnosis.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware #phawareMD