My transition from pediatric to adult care filled me with anxiety and proved to be much more difficult than how the experience was described to me. But, when care centers work together with their patients and listen to their concerns, we can improve cystic fibrosis care and address concerns much sooner.
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Two-thirds of people with cystic fibrosis in the U.S. experience debt, food insecurity, or housing issues.
Despite my knowledge of cystic fibrosis, I was scared when my son was diagnosed with the disease. I already had a toddler and worried how I would balance her needs with his medical care. Now that he is a year old, I realize my fears were worse than reality.
Cystic fibrosis kept me from thinking that I’d ever get married, but my improved health made my dream wedding possible. Three approaches helped me manage my CF while celebrating the happiest day of my life.
During the annual event, volunteers advocated for the PASTEUR Act and the HELP Copays Act, two bipartisan pieces of legislation that could have substantial, positive impact on the CF community.
Delivery of genetic therapies to affected tissues is a key challenge to developing new treatments for people with cystic fibrosis. In addition to investing in viral delivery and lipid nanoparticles, the Cystic Fibrosis Foundation is looking at the potential of a relatively new approach to delivery using an exceptionally small synthetic molecule called a polymer nanoparticle.
After I was told to stick with sprints because my cystic fibrosis would make it hard to become a distance runner, I was determined to prove that this disease won’t hold me back from my goals.