A lot of you know about my friend Larysa, whom for MANY reasons, I fully consider to be a walking miracle. The main reason is obvious however: she not only survived a double lung transplant, but she also recently celebrated her fourth anniversary of this incredible surgery and became a US citizen earlier this year. This past week there’s yet another reason to celebrate. The FDA has for the first time ever, approved a drug to treat lymphangioleiomyomatosis (LAM) which is the disease that caused her to need her double lung transplant in the first place! To know that new LAM patients will no longer have to be told that “there is no treatment; there is no cure” upon diagnosis is news we weren’t sure we would hear in this lifetime as LAM is an ultra-rare disease affecting only 2-5 women per MILLION women globally and there isn’t a ton of money funding its research. We always wonder why bad things happen to good people, and while we may never truly understand why this has been her journey, it is incredibly inspiring to watch her help shape this world, make history, and in doing so, create a brighter future for all LAM patients to come. Her bravery will lengthen and even save lives. And so yes, it’s fair to say that both literally and figuratively, Larysa is truly “one-in-a-million!”
Larysa, thank you for bringing your light to my life and teaching me so much about how to be grateful. I love you.
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm448523.htm