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.
CF Community Blog
Going on a camping trip is a great way to relax and unplug from the daily grind, but when you have cystic fibrosis, unplugging requires some planning and strategy.
By Amanda Henkes
May 19, 2017
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For adults with cystic fibrosis, it's easy to get trapped in your day-to-day routine because it's comfortable and allows for stress management via time management. I found myself less than enthusiastic to step out of my comfort zone and find an adventure because of the hassle of lugging all the necessary CF gear and medication along. In the year leading up to my 35th birthday, I vowed to rekindle my connection with the great outdoors. I found strategies to manage my care without sacrificing a rich and raw experience with nature.
Camping is gratifying to me because it connects me to the peace of nature. It also requires self-sufficiency and the mastery of certain skills to ensure that CF isn't an obstacle. There are many ways to camp with varying levels of the creature comforts of home. Based on budget and resources, I'm most experienced with camping in a tent at a designated camping area in a park, but the following strategies can be adapted across the range of camping styles from staying in a cabin or RV to roughing it off-grid on a backpacking adventure:
Most importantly, make sure you relax and have fun! I've found with diligent planning before a camping trip, my CF needs are easy to manage and don't require an exorbitant amount of time. This is particularly important to me because camping is a vacation from my regular routine and a way to connect as authentically as possible to nature. I can't forego my CF needs altogether, so creating an efficient and streamlined routine for packing my gear and doing my treatments is essential to my experience.
Amanda Henkes
Adult with CF
Amanda was diagnosed with CF at birth in 1981. She studied chemistry and Spanish at Southern Methodist University, and earned her Ph.D. in inorganic chemistry from Texas A&M University. Amanda works as a research scientist and enjoys trail running, hiking, and other outdoor activities in her free time. She lives and runs in Texas, and blogs at Please Pass the Salt. Follow Amanda on Instagram @mandyruns.
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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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