Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
Finding out that I couldn't swim because of the risk of further infections crushed me. It was hard to find a replacement activity that was fulfilling -- until I discovered the thrill of dirt bike racing.
September 26, 2019
Parenthood After a Lung Transplant
The Two Sides of Loneliness
I used to beg my parents to take me to the swimming pool every chance I had. In the summer, I spent my days swimming outside in the sun, getting involved in epic water fights, learning how to dive off the diving board, and competing with other kids to
see who could hold their breath the longest. In the winter, I'd do the same at my local indoor pool, but the indoor swimming pool also had a collection of two-story tall water slides, which I just couldn't get enough of.
When I was 14, I visited Niagara Falls in Canada and returned home with a productive cough, which was something I'd rarely encountered. I went to the hospital where throat cultures were taken, and a few days later, I was prescribed tobramycin to combat a Pseudomonas infection that had made its home in my lungs. My lung function dropped by almost 20 percent during that time, and I was forced
to breathe in the thick, sticky tobramycin twice a day for 30 days.
Fresh and stagnant water became my enemies. I finally understood why my doctors warned me against swimming in hot tubs or in stagnant ponds or having freshwater fish and amphibious animals as pets. Needless to say, I was crushed. I wasn't allowed to swim
at my local swimming pools I grew to love, due to the high risk of getting a Pseudomonas infection from that water. Although I explored the idea of swimming in saltwater pools instead, I worried about encountering Pseudomonas in
the showers, so I decided to find something else to fulfill my athletic and mental health needs.
I'd already been in taekwondo for almost two years by the time I caught my first Pseudomonas infection. Although the martial arts discipline met my athletic needs, it failed to fulfill my emotional needs. As I climbed up the belt ranks and got
into sparring, I felt no real satisfaction from taekwondo. It seemed repetitive and strict, and I never worked very well in such an environment.
I craved freedom and adventure. I wanted to encounter something new every time I did something. Punching the air 1,000 consecutive times for the 100th consecutive week in taekwondo class just wasn't doing it for me, and I got really bored. Because nothing
else was going on in my life, I got bored with life, too. That boredom eventually morphed into depression and that depression made it very difficult for me to find any motivation
to continue doing my treatments, taking my pills, and eating the right foods.
Then, when I was 15, my dad took me to a Nitro Circus Live show, which kick-started my obsession with freestyle motocross.
That Christmas, I got a miniature dirt bike, also known as a pit bike. I was told that as soon as I destroyed it, I could get an actual, full-sized dirt bike.
My enthusiasm returned to life almost as soon as I twisted the throttle for the first time, and my goal was to destroy it.
I learned how to crash, how to brush myself off, and how to crash again. I learned how to keep my balance and my cool even in very difficult situations. Freestyle motocross required my undivided attention, so for the time I spent riding around
on the pit bike, I never once thought about cystic fibrosis or the things it took from me.
Toward the end of my first summer riding the pit bike, a crash left me pinned underneath it. I was wearing motocross boots, but that didn't protect my foot from getting branded by the glowing hot muffler, which remained in contact with my foot for 45
seconds until my dad could finally rescue me. Instead of scaring me out of motocross, that injury only encouraged me to take freestyle motocross more seriously, because I knew I could take the pain with ease.
A couple months later, my dad got me a 1996 Honda CR80, which has been my dirt bike ever since. Although I've crashed a few times, had plenty of close-calls, and dished out a decent amount of cash for repairs, my love for freestyle motocross has only
grown with time. I love the adventure and the freedom a good, long dirt bike ride provides me. I've taken my dirt bike throughout the Colorado Rockies where I live, to the plains of my maternal grandpa's farm in North Dakota, and to the rolling blufflands
of my paternal grandparents' farm in Minnesota.
Freestyle motocross has granted me freedom like nothing else in this world. I don't worry about crashing, my health, my chores, or really anything when I'm riding. Adrenaline numbs any soreness or breathlessness I may feel, and I make sure to wear a bandanna
under my helmet to protect me from the dust that gets kicked up. More importantly, I don't get upset about the swimming pools I'll never swim in, or the ponds I'll never fish from, or the pets I'll never have. Instead, when I ride, only one thing
matters: whatever is directly in front of me.
Join the conversation on Facebook.
Young adult with CF
Born and raised in Colorado, Maya Nibbe was diagnosed with a heart condition called pulmonary atresia at birth and with cystic fibrosis two weeks later. Now 18 years old, Maya is working with her mom at a real estate office in downtown Denver and writing
a memoir. Soon, she will be attending college. When she isn't popping pills and taking on treatments, Maya enjoys riding dirt bikes with her dad, exploring the mountains, horseback riding, hunting, painting, cooking, and of course, writing. You can
connect with Maya on Facebook.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails