I have answered questions from many about what cystic fibrosis is, but the question that I really wanted to address was: why do I believe I have CF?
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After I had to go on disability to focus on taking care of my health, I got involved with the CF community and volunteered with Community Voice. Little did I know it would help me when I needed it most.
Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
For a new parent of a child with cystic fibrosis, it can be an enormous help to speak to other parents in the same situation. The support and shared knowledge offered by another mother made a huge impact on me when my newborn son was diagnosed with CF.
Although I have no personal ties to people with cystic fibrosis, I developed my own connection to the disease -- first as a biology student understanding the science behind CF, and second as a member of the Tomorrow's Leaders College Program, where I learned about the people behind the statistics.
Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.
Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.
Although I had heard of cystic fibrosis, I never knew anything about the disease until a chance meeting with a member of the CF community during a networking event. Since then, I have provided donations to CF events and am in awe of the determination and attitude that people with CF have about life.
At ResearchCon 2020, President and CEO Dr. Mike Boyle answered some of the community's top questions on COVID-19. Here's your guide to hearing the answers to your questions.
For those who haven't experienced it, the Cystic Fibrosis Foundation's annual Volunteer Leadership Conference is a magical time when everyone can get together and share moments of hardship and triumph in the fight against cystic fibrosis.