Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
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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.
Our community's shared journey makes us unique and unites us in the hardest of times for some and the most hopeful for others.
After my son was diagnosed with cystic fibrosis, I was stunned by some of the insensitive questions and comments I received from friends and family. Over time, I learned that their unsolicited feedback provided teachable moments that I hope to pass along to other families.
As a community, we are very good at masking and keeping a safe distance to reduce risk from germs. And just like we have highly effective therapies to treat CF, we now have highly effective vaccines to protect our kids from COVID-19.
Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
Don't let the internet fire hose of CF information overwhelm you. As a mother to two children with cystic fibrosis, I can give you some tips on avoiding common pitfalls.
I went through a roller coaster of emotions after my child was diagnosed with cystic fibrosis. One of the most important lessons I learned is that I had to take care of myself first so I could take care of my daughter.
Now that summer is upon us, you may be planning your next vacation. Although cystic fibrosis can make things a bit more complex, these eight tips can help you or your kids avoid as many germs as possible while traveling.
Figuring out your child's CF diagnosis is complicated on its own, but learning how to communicate everything that goes into caring for your child to those outside of the CF community can be even more overwhelming. Here are my tips and tricks to using your voice to both educate and advocate on behalf of your child.