As a lung disease specialist at University of Florida Health, Faye Pais, M.D., has seen the drastic effects myositis has on patients. Inflammation is widespread and can affect any part of the body. In at least 70% of cases, the disease attacks the lungs. Left unchecked, that inflammation and scarring can lead to irreversible lung damage and death.
Pais also saw the need for a better, more comprehensive way to treat people with lung-related myositis. With that, the Myositis Interstitial Lung Disease Center at UF Health was launched in late May.
As a unique subgroup of inflammatory disorders, myositis ILD can be challenging for physicians: Symptoms differ between patients, sometimes causing delayed or wrong diagnoses.
A dedicated myositis center brings many advantages for patients, said Pais, a pulmonary disease and critical care specialist. Doctors can monitor patients closely for antibodies that are the hallmark of myositis. When needed, a host of medical specialists are available through the ILD Center. They include a highly experienced, team of physicians with pulmonary, rheumatology, gastroenterology, rehabilitation medicine, neurology and dermatology expertise.
Borna Mehrad, M.D., the division chief of pulmonary medicine in the UF College of Medicine, is a great believer in “super-specialization” the ILD center offers.
“Patients should see doctors who live and breathe that person’s particular illness. The doctor should think, read, and write about it and be a world expert in it. This is especially important for uncommon and dangerous illnesses, such as the autoimmune myositis syndromes. These are subtle and complex diseases that sometimes involve muscle and skin, but most commonly involve the lungs, and are notoriously misdiagnosed and under-treated,” he said
While the disease is considered rare, physicians at UF Health and the Malcom Randall Veterans Affairs Medical Center in Gainesville encounter a significant number of patients with myositis and ILD. A pulmonary critical care physician by training, Pais’ commitment to the disease prompted her to take a major leap: Her weekly clinics at UF Health and the VA will now focus exclusively on patients with myositis and ILD.
In conjunction with Myositis Awareness Month, the Myositis ILD Center was officially announced on May 28 at an event that also served as the first patient support group meeting. Three of the center’s rheumatologists discussed clinical trials and advances in inflammation treatment.
Eugene Reeves, a veteran and ILD patient, told the support group he came to The Villages® seeking better weather. Soon after, Reeves was pleased to learn about UF Health’s commitment to comprehensive myositis care.
“When I arrived in the area, I quickly realized it was a great facility. I commend the doctors and their coordination of my care. I tip my hat to their efforts and the work they’re doing with this disease,” he said.
For Pais, myositis interstitial lung disease (ILD) is personal, so much so that she refers to the disease as “My ILD.” But it’s not just about treating the disease. She wants to ensure adequate support for patients’ caregivers while also empowering patients to own their disease and advocate for themselves.
“With prompt recognition and treatment, we can make a big impact on patient outcomes and quality of life,” Pais said.
Advancing myositis ILD research is also a priority for Pais. The team has a shared commitment to advancing research in myositis ILD and is seeking funding, she said.
Prospective patients who are interested in getting treatment at the myositis center at UF Health’s Medical Plaza in Gainesville need a physician’s referral. For more information, call 352-733-0111.