As a parent of two young adults with cystic fibrosis, Peter knows the financial challenges and obstacles people with the disease face when trying to access quality, affordable care.
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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.
My husband and I had always said that we would either have no kids, or we would have two. But, when our first child was diagnosed with cystic fibrosis, we were suddenly faced with a difficult decision.
After deciding to get a gastrostomy tube for our son, my husband and I made sure he was prepared for the procedure. What we weren't prepared for was the difference it made in his health, energy levels, and personality.
I depend on the medical expertise of my cystic fibrosis care team to keep my child healthy. I depend on the complementary expertise of other moms of kids with CF to help me stay emotionally healthy.
I've written about how tough a decision it was to get my son, Major, a gastrostomy tube. I also wrote about the benefits it has provided. Here's what the process taught me.
After my son was diagnosed with cystic fibrosis, I knew that I wanted to connect with other CF families. Fortunately, I've been able to find a group of moms who understand what my life is like and help me cope.
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.
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.
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.