As a mom to two children with cystic fibrosis, I know what works best for them and can identify the subtle signs of how they are feeling before anyone else. This makes me a valuable member of our CF care team.
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As the husband of Rebecca, who has cystic fibrosis, I've been criticized more than once for joking too much throughout our journey with CF. But if there is one thing my wife has taught me, it's that amazing courage is not improved by focusing on the imposing strength of the disease; it's magnified by laughing in its face.
When it comes to my cystic fibrosis care team, I've learned that it's often the little moments that matter most.
I never imagined that I would see cystic fibrosis as something to be grateful for. But now, in my 23rd year of life, I am thankful that CF has allowed me to open up about my struggles through spoken word poetry and find freedom in shared humanity.
Growing up with cystic fibrosis, my parents always encouraged me to take responsibility and be open and honest about my disease. That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road.
When it comes to lung function, I like to remind myself that the numbers aren't everything. Although my numbers may be “low,” they do not define my ability to live a full, happy life.
On Mar. 11, the Cystic Fibrosis Foundation presented the Alex, Jena and Dream Big Awards to leaders in the CF community for their dedication to the Foundation's mission of finding a cure.
As a mother of three sons with cystic fibrosis, Mary along with her husband, Harry, was determined to do all she could to find a cure.
The U.S. Food and Drug Administration (FDA) today expanded its approval of three CFTR modulators to include additional people with CF who have certain rare mutations. The approval enables more than 600 individuals with CF who were not previously eligible for modulators to access drugs that treat the underlying cause of their disease for the first time.
Throughout my 31-year-long career, I kept my cystic fibrosis a secret. Let me tell you why.