UF Health earns accreditation as clinic site to treat rare lung disease

The University of Florida College of Medicine’s division of pulmonary, critical care & sleep medicine was recently named the third accredited LAM and Rare Lung Disease clinic site in Florida by the LAM Foundation.

The site, which is led by director Mark Brantly, M.D., a professor of medicine, and associate director Ali Ataya, M.D., an assistant professor of medicine, will focus on patients with orphan lung diseases.

LAM, or lymphangioleiomyomatosis, is a rare lung disease that almost exclusively affects women of childbearing age and causes cysts to develop within the lungs. In many cases, LAM goes undiagnosed or misdiagnosed without the proper imaging tests.

“Our roles are to not only diagnose these patients correctly but also guide them toward the right therapy,” said Ataya.

It is important for physicians around Florida to recognize UF Health as an accredited clinic and to refer these patients to our clinic early, he said.

“We want to help treat women diagnosed with LAM to improve their symptoms and quality of life,’’ Ataya said. “We’re very fortunate to be chosen,” he added.

In the past, no treatment for LAM was effective, and Brantly said he saw patients with severe cases of the disease die while waiting for a lung transplant. In 2011, Brantly was a part of a group that found a new use for an old drug, changing how LAM is now treated.

“I was part of the group that developed sirolimus for the treatment of LAM, which was the first retasking of a drug that had been used for other diseases toward LAM,” he said. “It’s already changed the face of LAM in a major way and was one of the most exciting things I’ve ever done as a physician.”

Now, thanks to the use of sirolimus, lung transplants occur less often in LAM patients, Brantly said. Sirolimus also has been shown to be effective in reducing LAM symptoms and improving a patient’s life and longevity.

UF Health cares for more than 15 LAM patients, a significant number considering only 1,300 individuals in North America have the rare disease. 

“Having these rare disease centers is really important to the quality of life of patients,” Brantly said. “It’s a special honor. It’s a special responsibility as well.”

For more information, please contact: Rossana Passaniti at passar@shands.ufl.edu or at 352-273-8569.

Discussions: