Which Diseases Deserve 'Awareness'?
May is Cystic Fibrosis Awareness Month, and for my family it is also a month of loss. My family is broken by awareness of this disease and the memory of the wonderful guy we lost last week -- my cousin -- who never once complained about cystic fibrosis and the lifelong struggle he waged against it.
I was supposed to start my new job yesterday and instead I'm going to a funeral. My amazing new attending doctor told me he too has lost someone close to CF. It's a terrible thing to go to a funeral of someone young like you, who had so much vitality and passion for others. Death never leaves us unchanged or unaware. My cousin was passionate about so many things in life, especially sharing Jesus Christ with young people, but he was also passionate about never letting a disease stop him. And even in his passing, CF never beat my cousin. He never let that disease control him.
I always wonder: What diseases merit an "awareness month"? Breast cancer, colon cancer, AIDS, heart disease and leukemia/lymphoma, to name a few. I have seen most of the "awareness month" diseases in loved ones or patients over the years, and my utmost respect is for the 30,000 Americans living with cystic fibrosis. CF isn't a disease that sneaks up on you and your family. It requires constant fighting, vigilance and self-discipline.
CF has come a long way even in my own cousin's lifetime, with new drug developments and a few research breakthroughs. But it's still a rare, recessive genetic disease and pressing Congress for funding remains an uphill battle. A lot of focus is now on lung transplants, which is not always an option for patients.
There are many ways to cope, but I think my cousin would have wanted his family to cope by doing life well - yes, raising awareness about CF, but also enjoying beach vacations, little kids, Frisbee, soccer and coffee. Being aware of a disease requires action at some points and prayers at others. I feel like my battle against CF is just beginning but along the way, there will be coffee and beach weeks, and good memories of a wonderful guy who never let anything stop him.