UVM Medical Center gets national designation to help treat rare lung disease

Published: Aug. 7, 2019 at 9:48 AM EDT
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The University of Vermont Medical Center is now part of the Pulmonary Fibrosis Foundation's Care Center Network.

Doctors at the hospital say the designation means patients can expect a standard of care across all the network's 68 sites in 33 different states. UVM is the only site in northern New England. Researchers with the UVM Larner College of Medicine have been working with the UVM Medical Center to make strides in pulmonary fibrosis research.

"For patients who are already in our clinic, it's great because we get access to new research, so when a new clinical trial opens up, we will be able to have access to that," said Dr. Prema Menon, the director of UVM's Interstitial Lung Disease Clinic, where about 300 patients are treated.

Pulmonary fibrosis is a rare scarring of the lungs that makes it difficult for oxygen to enter the blood. More than 200 different diseases fall under pulmonary fibrosis. It can cause a variety of issues, from severe cough to eventually using oxygen. It kills about 40,000 people each year, and with no cure, about 50 percent of patients diagnosed with the disease will die in three to five years.

"I think many people get a diagnosis elsewhere or hear about it... they Google it. I think the good part about this is that when they Google it, our site will come up as a place they can come to for treatment," said Menon.

Menon says the medial center experts in pulmonology, radiology, pathology and rheumatology will care for patients as a team, while also studying the causes and therapies for the disease. Menon also started a support group for those with PF."

"My cough was just awful. It got so that I couldn't sleep at all," said Bruce Towne, a PF patient who is part of the support group. "So I finally went back to my doctor and said, if you don't do something about this cough I'm going to have to jump off the roof."

Towne is doing better now and Menon says it's patients like him in her support group that were the driving force behind applying for this designation.

"This is not just a center related designation, it really says a lot about the patients who are kind of telling us that they have this need," he said.