You may have heard that living with Cystic Fibrosis (CF) feels like breathing through a straw. Unfortunately, this isn’t an exaggeration. It’s true and I’m here to tell you it’s really, really scary. But the thing about having CF, or knowing someone with CF, is that despite the scary times, there’s a lot of hope, too. And for good reason: in spite of our orphan disease status (only 30,000 people with Cystic Fibrosis in the United States to date), the CF community is a fiery one – they get shit done. Thanks to the tireless efforts of the Cystic Fibrosis Foundation and their volunteers, the life expectancy has more than doubled in my lifetime alone.
But let’s not get ahead of ourselves. The median age of survival is still only hovering around 40. I turned 27 this past March. Since I’m a millennial, that means I’m just barely an adult (seriously, I went to the dentist by myself for the very first time last week – no cavities Mom!). And while CF isn’t a childhood disease anymore – with just about half of us CFers over the age of 18 – this current median age of survival is a hard pill to swallow. And trust me, we’re used to taking pills.
So what can we do? Well, let’s revisit that hope thing I touched on earlier. While there certainly are some bad days with CF, I’ve been beyond lucky to have many, many more good days. So many good days in fact, that I’m healthy enough to participate with my boyfriend in this year’s Cystic Fibrosis Xtreme Hike Colorado (Saturday, September 12, 2015) to raise funds, awareness, and above all else, hope for the CF community. And I’d love your help doing all three things. Please take a minute to donate if you can, share on your social, whatever it may be – and help us kick CF to the curb. 40 is not enough. Not even close. It’s time for a cure.
All donations help – big or small. Click here to help me reach my goal!