An Unwelcome Guest

I’ll take a break today from my customary posts to introduce you to an unwelcome family guest.

Lymphangioleiomyomatosis (lim-fan-gee-o-lyo-myo-ma-toe-sis), 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.

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 typically are similar to those of asthma, bronchitis or emphysema. Other symptoms include lung collapse which strikes my youngest sister, Kim Lash Gillespie, with frightening regularity. Last night, she suffered her fourth collapse since the onset of the disease last Fall and has been hospitalized. Surgery to reattach the lung is the likeliest intervention.

The shock of this happening to a family member is understandably depressing. However, it is more difficult to accept that this disease is now the burden of a world-class athlete who was captain of her tennis team at Georgia Tech and is former North Carolina state woman’s tennis champion.

Although there is currently no treatment or cure for LAM, there is hope. The LAM Foundation is urgently seeking an effective treatment, and ultimately a cure, for LAM through advocacy and the funding of promising research. They are the chief sponsor of the first-ever clinical treatment trial for women with LAM and are now enrolling patients.

In addition to keeping Kim and her husband William in your prayers, your gift to The LAM Foundation directly supports women with LAM and their families. More than 70% of funds raised are directed toward research that will help find a cure. Please make a tax-deductible donation today.