What is LAM?
What is Lymphangioleiomyomatosis (LAM)?
Lymphangioleiomyomatosis, better known as LAM, is a progressive lung disease that typically strikes women in the prime of their lives - most often during their childbearing years. Unfortunately, most women and many health care providers, including pulmonary specialists, are unaware of its existence or symptoms.
LAM is characterized by an unusual type of smooth muscle cell that grows uncontrollably and invades the tissues of the lungs, including the airways, and blood and lymph vessels. The accumulation of LAM cells form cell clusters and cysts, which destroy healthy tissue. Over time, the LAM cells create holes in the lungs, preventing the lungs from providing oxygen to the rest of the body and making breathing a daily battle.
| Lymphangioleiomyomatosis = lim-fan-gee-o-lyo-myo-ma-toe-sis
"Lymph" and "angio" refer to the lymph and blood vessels "Leiomyomatosis" refers to the formation of bundles of unusual muscle cells that form in the lungs |
How common is LAM?
The exact number of people living with LAM is not known. Though just 1,500 cases of LAM have been identified, scientists estimate that as many as 250,000 women may be going undiagnosed or misdiagnosed because of the commonality of the symptoms, which are similar to those of asthma, bronchitis or emphysema.
What causes LAM?
LAM Foundation investigator, Dr. Elizabeth Henske, discovered that LAM is caused by mutations in tuberous sclerosis genes. Tuberous sclerosis (TS) is another rare disease which causes tumors to form in many organs, particularly the kidney. There may be other causes of LAM, but we do know that there is a genetic link between LAM and tuberous sclerosis.
Benign angiomyolipomas (kidney tumors) are the most common TS lesions, occurring in 70 to 80 percent of TS adults and older children. Approximately 40 percent of LAM patients have these kidney tumors.
While women with LAM do not develop the central nervous system and skin changes of TS, the similarities in the lung and kidney manifestations of the two diseases have led some investigators to think that they may have common causes. For more information about TS, contact the Tuberous Sclerosis Alliance.
Although there is currently no treatment or cure for LAM, the first-ever clinical treatment trial for women with LAM is now enrolling patients.
Please click here to read more about LAM on The National Heart Lung and Blood Institutes, Diseases and Conditons Index.
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