LAM and Tuberous Sclerosis

Some cases of LAM occur in patients who also have tuberous sclerosis complex (TS-LAM).  It now appears that as many as 30%-40% of women with TS may also be affected with LAM.  The prevalence of TS-LAM is better established from population data.  TS is known to occur in approximately one out of every 6,000 births, making the estimated number of TS patients on earth one to two million.  Because TS occurs equally in women and men, there may be 8,000-10,000 cases of TS-LAM in North America alone and up to 250,000 patients worldwide.

There are some similarities between sporadic LAM and TS-LAM, but there are also substantial differences.  In general, many women who have TS-LAM experience less severe pulmonary complications than women who have sporadic LAM.  For some women with TS-LAM, however, the lung problems are identical to those of women with sporadic LAM and can be equally as severe.
The common features of sporadic LAM and TS are:

• Kidney growths. People who have TS get growths in their kidneys. These growths are the same as the angiomyolipomas that many women who have LAM get in their kidneys.

• Lung cysts. About 1 out of every 3 women who has TS gets cysts in her lungs. These cysts are the same as the ones that women who have sporadic LAM get in their lungs.

For more information about tuberous sclerosis, click here to go to the TS Alliance website.