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.
Although keeping up with daily cystic fibrosis treatments can be frustrating, it is key for staying healthy and living the life you want to live. So, Superhero Big Air Jerry was born to help kids with CF feel more empowered in their daily CF care and overcome challenges through positivity.
October 17, 2017
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Teenage Rebellion With Chronic Illness
We've all had moments in our lives when things are going really well and it's easy to see the positivity in everything around us. But, the real challenge comes when adversity strikes. Adversity comes in many different forms and is different for everyone.
That's why it's also up to each person to determine his or her response to a less than desirable situation.
In my own life, I truly believe that choosing positivity and reinvention -- when I am challenged and feel like my back might be up against the wall -- has not only made me stronger and healthier, but happier in my life.
When I was younger, I vividly recall being admitted to the hospital (in what I call the “dark ages” of cystic fibrosis). I found hospital stays to be horribly daunting, as the prognosis of the disease was bleak and I was missing out on time with my friends,
family, and yes, even school. Simply put, I felt like I was missing out on the life I wanted to live. That's when I knew that I had a choice to make -- I could succumb to
pity or grab life by the horns and LIVE.
I decided at a very young age to take an active role in my own health and do whatever I had to in order to avoid the four walls of a hospital room. This decision, coupled with growing up in a big family with supportive parents, helped me develop a lifelong
foundation of a positive, consistent mindset that's led to an extraordinarily strong connection between spirit, body, and mind. I didn't realize it when I was young boy, but it was probably then that the idea of Superhero Big Air Jerry started to
When you have CF, the daily treatment routine can become frustrating and make you feel ostracized from other kids. At the same time, however, being consistent with
your treatments is key if you want to not only live, but thrive. Just as an athlete cannot train once a week and expect to be a champion or a student expect to skip class and succeed in school, you cannot stay healthy without being compliant on a daily basis.
I created the character of Superhero Big Air Jerry to help parents empower their kids with CF through a relatable superhero. These kids develop confidence when
they meet Big Air Jerry, as they see how cool his superpowers are (which include tornado force inhalations/exhalations, a pill case in his belt that wards off bad stuff, teaching kids compliance and deep breathing, taking daily medications to maintain
his superhero status, keeping his lungs clear with his special nebulizer hose, and more).
At the same time, Superhero Big Air Jerry is not perfect and, in this way, is much like myself. I know that life will always present me with challenges, whether mental or physical, and I will be knocked down from time to time. In fact, all people will experience this.
So, we must remind ourselves every day to believe and FORGE AHEAD!
Adult with CF
Jerry was diagnosed with cystic fibrosis in 1967 at the age of 11. Currently a CF Ambassador at the Boomer Esiason Foundation (BEF), Jerry leads its scholarship and grants division and is the founder of Team Boomer -- the athletic arm of BEF dedicated to encouraging exercise among CF patients while simultaneously raising money for scholarships. He has also started the program You Cannot Fail, which includes apparel, a website, an autobiographical coffee table book, and two children’s books. On top of all of this, he records educational podcasts and videos and encourages other people with CF to share their stories on Club CF. He has completed two 500-mile “Bike to Breathe” bike tours. Jerry believes that exercise is the single most important thing in his life that keeps him healthy with CF. Follow Jerry on Jerry Cahill's Cystic Fibrosis Podcast.
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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.
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