I dreaded transitioning from my pediatric care center to my adult care center. I was stubborn and knew that I did not want to go. I thought I knew best, that is, until one phone call changed my entire perspective.
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Nearly 200 teens from across the country -- nearly half living with cystic fibrosis -- participated in the Foundation's Virtual Teen Advocacy Day to advocate for the CF community.
More than 200 advocates gathered on Capitol Hill during the Cystic Fibrosis Foundation's 14th Annual March on the Hill, championing antibiotic research and development and other policy needs on behalf of people with CF.
I got into advocacy to work for the common good of all people with cystic fibrosis. Little did I know that this work would help me in a very personal way.
Living with cystic fibrosis means you have to handle complicated logistics, like filling prescriptions, working with insurance companies, and scheduling appointments. Taking over these responsibilities from my mom was an adjustment, but I came up with a few tips to make the process much easier for me.
Many people with cystic fibrosis experience hemoptysis. Although that can be serious and is often frightening, most often it's not as serious as you might think. Let me set the record straight.
Although packing up and moving to college is not easy for anyone, it becomes more complicated for a person living with cystic fibrosis. Not only do we have to adjust to the unfamiliar ways of college life and be entirely in charge of our health, but the group of people we trust with our life changes as well.
When I first got an enteral feeding tube as a teenager, I had no idea how many doors it would open for both my health and my involvement with the cystic fibrosis community. Fifteen years later, here's how I'm doing today.
If you have cystic fibrosis like I do, then you know how important it is to protect our health care. That's why we must advocate for three key policy principles that are critical to allowing people with CF to access the high-quality, specialized care we need.