From scheduling appointments to dealing with insurance, taking charge of your own care is a part of becoming an adult with cystic fibrosis. However, when the time came for me to take over these responsibilities, I realized more could be done to make the transition smoother.
Site Search
You can best manage your health when you know what to expect, what resources you can use, and a community of people with whom you can share your experiences.
As someone who is in the hospital three to four times a year, I've found that there are a few things I need to create a comfortable environment. I love to look online and see what other people with CF bring to the hospital, so hopefully, my list will give you a few ideas for your next stay.
The Cystic Fibrosis Foundation, alongside the CF community, urges Congress to pass the PASTEUR Act and the HELP Copays Act.
In 1955, the Cystic Fibrosis Foundation was founded by a group of concerned parents who wanted to raise awareness of CF. The strength of the CF community has driven forward incredible advancements in research and care. It’s important to remember that one voice can make all the difference.
Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.
When I started coughing up blood, letting my care team know helped me handle it the next time.
Alongside the cystic fibrosis community, we advocate for policies and programs that promote access to highly specialized CF care and that help advance research and drug development.