The Rare Lung Disease Clinic at MUSC is dedicated to help patients find a cure or care for their disease. The clinic is part of two networks, the Alpha-1 Foundation Clinical Resource Centers formed by the Alpha-1 Foundation and the Rare Lung Disease Clinic Network formed by the LAM Foundation.
Alpha-1antitrypsin deficiency (Alpha-1) is a genetic disease predisposing affected individuals to chronic obstructive pulmonary disease (COPD) with emphysema or bronchiectasis or to liver disease. Since this disease is genetic, family members may be affected from childhood to late adult years. This program sponsors the Alpha-1 Foundation Genetic Counseling Center, the Alpha Coded Testing Study for home genetic testing, and the Alpha-1 Foundation Research Registry. For more information, please visit the Alpha-1 Foundation website.
Lymphangioleiomyomatosis (LAM) is a progressive disease characterized by cysts in the lungs. It affects women almost exclusively, causing shortness of breath from air that gets trapped in the cysts in the lungs. Visit the LAM Foundation website for more information.
Other rare diseases are part of the Rare Lung Disease Clinic Network and include Sjogren's Syndrome-associated lung disease, Birt-Hogg-Dube Syndrome, Gorham's Disease, pulmonary alveolar proteinosis, and Langerhan's Cell Histiocytosis.