When I was diagnosed with cystic fibrosis at age 40, I was in denial at first. Then, I compartmentalized my CF, relegating it to a small part of my life. Now I have embraced my diagnosis, and I have become a CF advocate, fundraiser, and blogger.
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The recent birth of my son brought me news that I never expected -- a diagnosis of cystic fibrosis.
I can't say I was happy to get this diagnosis, but I was definitely relieved to have answers. At least I knew who I was in the ring with.
For parents of a child newly diagnosed with cystic fibrosis, it can be scary to read what's online about CF. However, I want to shed some light and positivity on what it's like to have CF. Everyone with CF is different, and it's possible for your child to lead a full life.
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.
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.