Newswise — MAYWOOD, Ill. – A rare and potentially deadly lung disease called Lymphangioleiomyomatosis (LAM) strikes women during their childbearing years.
Symptoms of the debilitating disease, which almost exclusively affects women, include shortness of breath, chest pain, chronic cough and lung collapse. As the disease progresses, many patients must go on oxygen, and some require lung transplants. LAM can cause death from respiratory failure.
About 300 patients, doctors, nurses and scientists will discuss the latest advancements in the fight against LAM, during the 20th annual LAM Foundation International Research Conference March 26-29th.
Among the speakers at the 50 sessions are doctors and nurses from Loyola University Medical Center’s LAM clinic. Loyola is the only center in Illinois to be designated a Center of Excellence by the LAM Foundation. Loyola treats about 60 LAM patients, making it one of the largest LAM clinics in the United States. Loyola also has the oldest and largest lung transplant program in Illinois.
The 2015 LAM conference will be held at the Hyatt Regency O'Hare in Rosemont, Ill. Daniel Dilling, MD, medical director of Loyola’s lung transplant program and LAM clinic, will discuss the latest developments in lung transplantation. Dr. Dilling also will give an educational talk to patients and their families.
Several other Loyola clinicians and scientists also will speak. Rachael Dunn, RD, LDN, will talk about nutritional issues. Emily Gilbert, MD, will talk about pulmonary function tests. Jane Thomas, RN, will be part of a panel that will discuss lung transplantation. Terrence Demos, MD, will talk to patients and families about understanding X-rays and CT scans. Caroline LePoole, PhD, will discuss the potential of immunotherapy for treating LAM. Dr. LePoole has received funding from the LAM Foundation and the federal government to investigate a potential immunotherapy in which the patient’s own immune system cells, called T lymphocytes, would be manipulated into attacking the cells that cause LAM. In patients with LAM, abnormal cells start growing out of control in the body, including the lungs, lymph nodes, lymph vessels and kidneys. Over time, the abnormal cells form cysts that can invade the lungs, destroying and replacing normal lung tissue. LAM is progressive and frequently fatal.
There is no cure for LAM. However, with early intervention and treatment, a LAM patient’s quality of life can be improved and her lifespan dramatically extended.
“At Loyola we provide a breadth of experience and skill in specialty areas that pertain to LAM,” Dr. Dilling said. “We can manage the spectrum of LAM issues, ranging from minor shortness of breath to lung transplantation.”
Loyola’s LAM clinic includes pulmonologists, radiologists, pathologists, interventional radiologists and cardiothoracic surgeons, who work together to diagnose, treat and manage complications of the disease. They are supported by respiratory therapists, nutritionists and physical therapists.
Patients at Loyola’s LAM clinic have access to a variety of clinical trials designed to find treatments for LAM. To schedule an appointment with Loyola’s LAM Clinic, call (888) LUHS-888 and ask for extension 6-4946.
The LAM Foundation, based in Cincinnati, is working on a national basis to enhance the care of LAM patients as well as fostering collaboration among scientists, clinicians and patients to inspire innovative research efforts. Over the past 20 years, The LAM Foundation has raised more than $19 million and directed the majority to research. These funds have contributed to three major scientific breakthroughs, including the first evidence of a genetic link to LAM, the identification of a LAM gene, a molecular explanation for abnormal smooth muscle cell growth in LAM and the first-ever LAM treatment trial.
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