June 1, 2011 is the first Worldwide LAM (Lymphangioleiomyomatosis) Day. LAM is a rare, progressive, cystic lung disease that strikes primarily healthy young women. LAM is characterized by an unusual type of smooth muscle cell that invades the tissues of the lungs. Over time, the LAM cells create holes in the lungs, preventing the lungs from providing oxygen to the rest of the body. There is currently no cure for LAM, but research trials are underway to find a treatment. (www.thelamfoundation.org)
Why do I care about Worldwide LAM Day? After several months of being treated for moderate-severe asthma, my sister was diagnosed with moderate-severe LAM in February. My sister – my childhood playmate, a field hockey player and track runner, the valedictorian of her high school class, my early-morning walking partner before kids, always my friend and confidant, my cheerleader through life and my rock, which she will forever be! – can no longer play tag with her daughter or help her learn to ride her 2 wheeler, can no longer climb a flight of steps without becoming winded and goes through life with less than 44% lung capacity, which will only continue to decrease.
As I watch my sister walk this road of increasing physical limitations not to mention seemingly endless visits to pulmonologists and lung specialists, I feel so helpless knowing I cannot stop what is going on inside her body. But what I can do is raise awareness and lobby for a cure. I had the great privilege of attending LAMposium with my sister and various family members in April where we met caring and attentive doctors from around the world who are diligently searching for the reason LAM occurs and also for a cure. We learned about a recent drug trial that has shown promising results in slowing the progression on LAM. These doctors have many ideas of trials to run and research to perform, but lack the funds necessary to do it. If you have a sister or girlfriend who has stood by you through thick and thin, has believed in you when you did not believe in yourself, and has inspired you to levels of achievement greater than you ever dreamed like mine has, consider donating to the LAM Foundation (www.thelamfoundation.org). And hopefully someday these women – daughters, mothers, sisters, aunts, wives and friends – will be able to lead the lives they dreamed of living and breathe the “Breath of Hope.”
If you wish to learn more about this very rare disease or donate to help find a cure, go to www.thelamfoundation.org