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.
After starting on Trikafta®, I finally became able to travel without getting an immediate exacerbation when I returned home. Now, I am relishing the opportunity to travel abroad, while taking every precaution necessary to protect myself from the pandemic.
August 2, 2021
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Traveling the world for someone who suffers from cystic fibrosis always seemed impossible. While I was growing up, I had never been away from home for longer than a weekend and -- even then -- sometimes that was too much for my body to handle. Every short
vacation that I went on always resulted in a three-week hospitalization. I started to believe that seeing other countries was out of the question for me.
As a kid I was very active in sports, so I was always relatively healthy until my teenage years. I was first hospitalized when I was 20, and it became a regular thing every couple of
months. I started to see my lung function decrease with every hospital stay. Seeing my FEV1 percentage decrease so rapidly from the 100s to the 30s reminded me of a cell phone dying with no charger in sight.
In 2019 I was turning 29, and I got approved for Trikafta®. Coincidentally, I also booked my first flight to Lima, Peru, in more than 20 years. I went on my trip expecting that I was going to get sick; but it was the first time that I didn't get an exacerbation. I made sure I did all my meds and even took time out of my trip to exercise when I could. This was the first time as a young adult in another country and that's when my perspective on life changed completely.
Feeling the “culture shock” was such a delight.
I realized there was more to life than just the 50-mile radius of my hometown, Miami. Although I always felt fortunate I lived in a “vacation” city, I always knew this planet had more to offer.
After this trip, the rest was history. I completely fell in love with the idea of being on a plane and having adrenaline rush through my veins.
I traveled to several countries and Puerto Rico was next on my list, but then the pandemic hit. Everything stopped and so did traveling.
I was fortunate enough that I never caught COVID-19, but as things started to slow down in the United States, I resumed traveling. After eight months, I booked
a trip to Mexico, and it went very well. Traveling with a chronic condition during a pandemic was a little scary, but I felt safe knowing I was taking every precaution seriously -- wearing my mask indoors, washing my hands after every engagement,
and maintaining social distancing whenever I could.
When I travel, I also make sure to bring all my essential CF medications in my carry-on bag. Even though it is rare, I do not want to take any chances with an airline losing my luggage along with all my medications. It's also crucial to take a little
more than needed. There may be delays where you don't necessarily get home on time.
Another crucial regimen I stick to while traveling is finding the time to do a 30-minute exercise session at least two to three times during my vacation. I find exercise helps me stay healthy for the duration of my trips.
I always make sure to purchase travel insurance. Policies are usually cheap and might be needed if worse comes to worst.
Everyone has different rules and restrictions when they travel, but I believe these are crucial for me to travel responsibly.
After traveling to Iceland a couple of weeks ago -- a country that I always felt would be impossible for me to visit -- I've realized I have the ability to go anywhere I want.
Traveling with a chronic condition during a pandemic may be too risky for some, but what is life without a little risk?
I truly believe it is absolutely safe to travel for someone with CF as long as you do everything you're supposed to do to travel safely and responsibly.
Don't let CF hold you back on your passions in life.
We, too, can dream big and achieve great things.
See ya on the other side of the world!
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Daniel is an exercise physiologist for his local hospital and has his bachelor's degree in sports medicine. Diagnosed with cystic fibrosis at 8 months old, he grew up playing sports and found a passion in exercise as he learned how beneficial it is for
his condition. He decided to make it his career and help individuals to become healthier every day. A newly discovered passion of his is to travel the world. Find him on Instagram and follow along on
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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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