Lymphangioleiomyomatosis (LAM) is a progressive lung disease that usually strikes women during their childbearing years. Lymphangioleiomyomatosis is pronounced lim-fan-gee-o-ly-o-my-o-ma-to-sis. “Lymph” refers to the lymph vessels and “angio” refers to the blood vessels. “Leiomy” means smooth muscle, “oma” is a tumor, and “tosis,” refers to a disease condition. LAM is a systemic neoplasm that results in cystic destruction of the lung. It is characterized by an abnormal growth of smooth muscle cells. These cells invade lung tissues, including the airways, and blood and lymph vessels. Although these cells are not considered cancerous, they grow uncontrollably within the lungs. Over time, the cells form bundles in the walls of the airways, as well as the blood and lymph vessels, causing them to become obstructed. These cells produce materials that break down tissue causing the formation of cysts. The delicate architecture of the lungs is destroyed and the airflow is blocked limiting the delivery of oxygen to the rest of the body. LAM manifests itself in a wide variety of ways, so it is sometimes difficult to diagnose. The difficulty of the diagnosis is compounded by the fact that a lot of the symptoms of LAM are similar to those of other lung diseases such as asthma, emphysema, and bronchitis. Chest x-rays are not usually sufficient to detect LAM, but a high-resolution chest CT scan can detect the characteristic cystic structure of LAM, thus providing an accurate diagnosis, if other manifestations of the disease (e.g., benign kidney tumor, lung collapse, or fluid in the lungs) are present. In some circumstances, a lung biopsy may be needed to provide an accurate diagnosis. The cause of LAM remains unknown, and although great strides have been made in researching the disease, no cure is yet available. A recently completed treatment trial (the MILES Trial) suggested that a drug called sirolimus, or rapamycin, may improve lung function in some women with LAM. More than 2,000 women with LAM have been identified as a result of the Foundation’s efforts, but scientists now estimate that as many as 250,000 women worldwide may have LAM, but are currently undiagnosed or misdiagnosed with asthma, emphysema or pulmonary bronchitis. In this short period of time, The LAM Foundation has raised over $15 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. The LAM Foundation continues to be actively engaged in identifying potential targets and treatments for LAM. The most promising treatment identified through this work has been studied in a LAM treatment clinical trial, the MILES Trial.
The LAM Foundation Mission
The LAM Foundation urgently seeks safe and effective treatments, and ultimately a cure, for lymphangioleiomyomatosis (LAM) through advocacy and the funding of promising research. We are dedicated to serving the scientific, medical and patient communities by offering information, resources and a worldwide network of hope and support. The LAM Foundation is here to help you raise awareness. The following items are available either by downloading the link or by contacting The LAM Foundation at 513-777-6889 or email us at firstname.lastname@example.org
Meet Mary Kate, a volunteer at the studio. Zen and Now donates to LAM by supporting their Annual Santa Speedo Run and hopefully more in the future.