Growing up with my sister, who has cystic fibrosis, has its challenges. Although it is sometimes difficult to watch her have to miss out on the things she loves, I've been able to learn so much and connect with many other amazing family members of those with CF.
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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.
Although I asked for help to manage the physical aspects of my disease, it took a long time for me to feel comfortable asking for support for the emotional impact of cystic fibrosis.
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.
As a mother of two children with cystic fibrosis, I am glad to hear that the Cystic Fibrosis Foundation is launching the Infection Research Initiative to address the chronic infections that dramatically impact the lives of people with CF.
I am grateful that I can run and work out at the gym even though I have cystic fibrosis. Still, I can't help feeling guilty that others with this disease are struggling, and it's hard to shake the feeling that one day it could be me.
I dreaded transitioning from my pediatric care center to my adult care center. I was stubborn and knew that I did not want to go. I thought I knew best, that is, until one phone call changed my entire perspective.
On my first international trip, I found myself in an interrogation room explaining my port to security officers.
As someone with cystic fibrosis, Lynch Syndrome, and CF-related diabetes, preparing for a colonoscopy can be a challenge. Fortunately, I've become very well-versed in how colonoscopies work and how to prepare for them over the past 10 years.