What Is LAM?

LAM, or lymphangioleiomyomatosis (lim-FAN-je-o-LI-o-MI-o-ma-TO-sis), is a rare lung disease that mostly affects women in their mid-forties.

In LAM, an unusual type of cell begins to grow out of control throughout your body, including in the lungs, lymph nodes and vessels, and kidneys.

Over time, these LAM cells form cysts and clusters of cells, which grow throughout the lungs and slowly block the airways. They also destroy the normal lung tissue and replace it with cysts. As a result, air cannot move freely in and out of the lungs, and the lungs cannot supply enough oxygen to the body’s other organs.

More than 1 out of every 3 people with LAM also develops growths called angiomyolipomas (AN-je-o-my-o-li-PO-mas), or AMLs, in their kidneys. People with LAM also may develop:

• Growths in other organs, including the liver and brain
• Large tumors on their lymph nodes

There currently is no cure for LAM.

The most common cause of death from LAM is respiratory failure.

There are two forms of LAM:

• Sporadic LAM, which occurs for unknown reasons
• An often milder form of LAM that occurs in people with a rare inherited disease called tuberous sclerosis complex

The term “lymphangioleiomyomatosis” comes from the Greek. “Lymph” and “angio” refer to the lymph vessels, and “leiomyomas” refers to the type of cells involved in LAM.

Doctors have learned a lot about LAM in recent years. They are now able to diagnose the condition earlier and provide support services that improve patients’ quality of life. Not too long ago, doctors thought that the life expectancy for women with LAM was less than 10 years following diagnosis. We now know that some patients with LAM may survive for more than 20 years.

April 2008