How common is LAM?
LAM affects almost exclusively women of childbearing age, although several cases have been reported in which the disease was thought to have developed after menopause.
The precise number of people who have LAM is not known. In Canada, it is estimated that about 50 people have LAM.
It also has been suggested that LAM has become more common during the past five to 10 years, although it may be that doctors are doing a better job of diagnosing it.
What is the course of LAM?
LAM gets worst over time. Each patient’s disease develops at different rates.
As the disease advances, there is more extensive growth of muscle cells throughout the lung and repeated leakage of fluid into the chest cavity (pleural effusions). As an increasing number of cysts are formed, the lung takes on a honeycomb appearance.
The survival time following the diagnosis of LAM is uncertain, as the disease seems to be highly individual. It had been reported to be less than 10 years, but new reports show patients living more than 20 years after diagnosis.
Living with LAM?
In the early stages of the disease, most people can go about their daily activities, including attending school, going to work, and performing common physical activities, such as walking up a hill. As the disease develops overtime, breathing can become more difficult and home oxygen may be needed.
People with LAM should talk to their doctor about exercising, and living with their disease.
Travel to remote areas where medical attention is not readily available or to high altitudes where the blebs can expand and rupture should be considered carefully before undertaken.
Some people with LAM have been pregnant without any worsening of the condition. In others, however, the disease has deteriorated. Complications such as pneumothorax and a pleural effusion appear to occur more often during pregnancy.