For those who haven't experienced it, the Cystic Fibrosis Foundation's annual Volunteer Leadership Conference is a magical time when everyone can get together and share moments of hardship and triumph in the fight against cystic fibrosis.
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It can be a lot to manage two children with cystic fibrosis who have other health issues. I made it work by making my children responsible for their own treatments and not sweating the small stuff when we can't be perfect.
Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.
CF Foundation Public Policy interns Shannon, Oakey and Erin share highlights from attending Teen Advocacy Day 2015, where 62 teens from across the country traveled to Washington, D.C., to meet with their Representatives and advocate on behalf of their siblings, friends and relatives with CF.
Alexa was my best friend: the class clown, the leader of our wolf pack and the greatest sidekick I could ever have. Every day I spent with her was a blessing. I will cherish our memories until we meet again.
I struggled when I learned that in addition to cystic fibrosis, my daughter also had adrenal insufficiency. I felt anger, sadness, and anxiety. But thankfully, with the support of my husband, family, friends, and care team, we learned how to manage her condition and deal with emergencies.
Here's a snapshot of six works we're spotlighting from members of the CF community. Whether they shared their story through writing or through song, their work has been shaped by their experiences of living with CF.
My partner, Jan, was a CF fighter for 50 years. She lived an amazing life and celebrated her lung transplant to the fullest. She passed away a few months ago and I'm honored to keep her fight against CF going strong.
Living with cystic fibrosis, I owe gratitude to the friends, family, and care team members who love me, support me, and make my life easier. Join me in letting those who support you know how much you appreciate them.
Even though nobody close to me had cystic fibrosis, I decided to try to make a difference in the lives of people with CF.