I never imagined that I would see cystic fibrosis as something to be grateful for. But now, in my 23rd year of life, I am thankful that CF has allowed me to open up about my struggles through spoken word poetry and find freedom in shared humanity.
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Growing up with cystic fibrosis, my parents always encouraged me to take responsibility and be open and honest about my disease. That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road.
When it comes to lung function, I like to remind myself that the numbers aren't everything. Although my numbers may be “low,” they do not define my ability to live a full, happy life.
Throughout my 31-year-long career, I kept my cystic fibrosis a secret. Let me tell you why.
Last year -- just one week before my 12th birthday -- my doctor reached out to my family and asked me if I wanted to enroll in a clinical trial. Here's why I decided to say yes.
Many people have asked me why I would want to climb the highest mountain in Africa with no climbing experience. The answer is simple: an undeniable love for my daughter, Jennifer, and a determination to raise money for all those living with cystic fibrosis.
I didn't always think that Teen Advocacy Day could make a difference. Turns out I was wrong.
As the mother of two girls with cystic fibrosis, the time-consuming routine can wear down on you and cause frustration. Although CF can be challenging, it's important that I keep my attitude toward the disease in check because I know it will ultimately shape how my kids approach their lives with CF.
Two 2017 Volunteer Leadership Conference attendees, one a veteran attendee and another a newcomer, reflect on their experiences in Dallas, Texas.
When my son Sam passed away at the age of 9, people told me that the love we shared would never die. But, it wasn't until I received an unexplainable gift on the first Mother's Day after his passing that I truly believed it.