Reflecting the continued momentum we're making in the fight against cystic fibrosis, the latest Patient Registry data show steady gains in survival for people with CF. With this good news comes a lot of excitement, along with some questions.
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I went through a roller coaster of emotions after my child was diagnosed with cystic fibrosis. One of the most important lessons I learned is that I had to take care of myself first so I could take care of my daughter.
How much are you willing to do for a loved one? The answer is simple: anything and everything, right? We advocate for them, make sacrifices to be with them and worry about them constantly. Last year I did all of this, but -- somehow -- still felt pangs of guilt.
Many of the people I thought I could count on disappeared during a period when my health declined. Losing those people helped me discover that my real support network was made of the friends who stuck around and those I have met since.
According to social worker Kim Reno, removing critical health care protections in current law would be devastating for people with cystic fibrosis and their families.
Although having cystic fibrosis can lead to awkward situations, dealing with it with humor and grace has helped me put them in perspective.
Join us on May 21 at CF MiniCon: Transplant, a virtual event that will focus on transplants for adults with cystic fibrosis.
Reaching new milestones in my life as a 24-year-old with cystic fibrosis -- graduating college, starting my career -- has been rewarding, but it's never been easy. The opportunity to share my experiences and learn from others is why I'm thrilled to help people with CF connect at CF MiniCon: Young Adult on July 22.
Growing up, the term “life expectancy” was always with me, affecting my choices and expectations. Over time, I learned to tune it out and live my life my way.
As an adult with cystic fibrosis, I know just how powerful and creative the CF community can be. That's why I'm excited to announce the four 2017 Impact Grant awardees who are making a positive impact on the CF community.