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“LAM is a disease that kills women from all races, classes and countries — primarily while in their child bearing years. It affects the lungs, kidneys, lymphatic system, and at times the brain. There is no known cure, but we are working hard to find one.
Lymphangioleiomyomatosis (lim-FAN-jee-o-LYE-o-MY-o-ma-TOE-sis) is a rare, fatal, multi-system disease affecting women in their childbearing years. LAM causes destruction throughout the body, often in the lungs, kidneys and lymphatics. This destruction is attributed to migration, clustering, cell signaling and cell-other cell-cell “LAM cell” abnormalities. Over time, patients may progress to respiratory failure as cysts and nodules take over normal lung. There is no known cure or treatment, and the mechanisms of destruction of lung and other tissues in LAM are poorly understood. One gene defect (TSC2) has been identified in lung tissue, kidney lesions (i.e., angiomyolipomas or AMLs) and circulating cells. Work to identify other mutations and modifier genes is now underway.
Early symptoms of LAM may include shortness of breath, collapsed lung(s), chest pain, abdominal discomfort, and frequent coughing. Over time, women with LAM may experience complications due to leaky lymphatics (chylous or pleural effusions), become less active and require supplemental oxygen full time. Not only is LAM commonly mis-diagnosed as asthma, emphysema or bronchitis, it is also under-diagnosed, as a LAM diagnosis requires a high-resolution CT scan. People with respiratory issues are not routinely scanned due to cost and other factors. There is increasing thought that otherwise healthy, non-smoking women with one or more pneumothoraces (i.e., lung collapses) should have a CT scan to rule out LAM. Progression is variable in LAM. Women with LAM can progress to respiratory failure in less than two years or more than 20 years. We cannot predict who will progress quickly very accurately at this time. “