When my daughter was diagnosed with cystic fibrosis, our nurse looked at me and said, “Welcome to the family!” Although I wanted to punch her otoscope lights out at the time, I think I'm finally starting to understand what she meant 13 years later.
Site Search
My atypical cystic fibrosis led doctors to believe that my health issues had another cause. Members of the CF community welcomed me as one of their own and helped me to find the answer.
My husband and I spent our first weekend as parents contemplating the news that our new son had cystic fibrosis. Although we handled it in very different ways, we were ultimately able to overcome the initial shock, with an entire team to help us along the way.
Although we may have had nine months to prepare, getting our daughter's cystic fibrosis diagnosis before she was born came with a unique set of challenges.
Every person has two copies of the cystic fibrosis transmembrane conductance regulator (CFTR) gene. A person must inherit two copies of the CFTR gene that contain mutations — one copy from each parent — to have cystic fibrosis.
With a late diagnosis, I had every reason to feel hopeless and alone, but getting involved and connecting to others truly gives me hope for my future.
When my daughter was diagnosed with cystic fibrosis as a newborn, I was shattered. But then, I decided I would raise her to know that CF was something she had, not who she was.
Our dream for our daughter, Eden, is the same one that parents have for their kids who don't have cystic fibrosis. We want her to be happy and realize her true potential.
Having lived with cystic fibrosis for 47 years, I want to pay it forward and share the life lessons I've learned with new parents of children with CF.