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.
When I am sick, I find creative ways to exercise, even if it's just walking a short lap around the house to keep my strength up. I also make sure that I eat well and have a game plan for getting good food if I get sent to a hospital.
June 18, 2019
An Emotional Reunion With My Donor’s Family
Bonding With My Son During Daily Treatments
When you have cystic fibrosis, it is so easy to lie around all day when you are feeling sick; but it is important to keep moving, no matter how small the task or how short the movement. Moving is great for supporting lung health, and it helps you cough up excess sputum, which normally plagues me when I am having an exacerbation.
Another critical activity is eating, especially when you are ill. If you do not eat enough, especially protein, your body will start to feed on your muscles. Eating well is vital for recovery and strength. Here are some things you can do to help yourself at home:
Tips for eating at home
I frequently have bouts of nausea while I'm on IV antibiotics. Certain foods -- even some of my favorites -- can cause me to become sick instantly. During this time, my husband lets me choose what's for dinner, and each night will be different. Sometimes I'll want a home-cooked meal, while other times I prefer quick takeout.
Pick foods that are rich in protein. Ever hear the phrase, “Protein helps you heal?” Well, I grew up hearing that, and each time my mom says it, I STILL have to give her a HUGE eye roll. It frustrates me greatly, but I know she's right … even if I never tell her that.
Sometimes when all else fails, just getting in calories is super important. When I'm on an IV, I'll eat my “growing food” first (protein, real food) and then -- to help my body keep on weight -- I'll reach for that blueberry muffin, brownie, or soft pretzel.
Take a walk (with a mask, of course) around the unit. Venture farther to other parts of the hospital or to other floors. Your care team will be quite impressed that you are taking the initiative to walk around and will not hold you back.
The easiest place to lose muscle mass is when you are in the hospital -- you may not be eating as much with limited food options, your bathroom is only three steps away, and the staff waits on you hand and foot. Get in your exercise by wandering around. Ask for a portable oxygen tank, make sure your IV pump is fully charged, and then walk. Before leaving, always let your care team know you are taking a walk. Be sure to walk between IV antibiotics and breathing treatment times, so you don't miss any medications or treatments.
Your TV and bed will always be there for you when you get back. Make sure to move when you get a little bit of energy. It's better to be moving slowly, then to be lying down all day just letting the infection fester.
Coping with hospital food
Definitely have your friends and family bring you good food. A limited hospital menu can get old really quickly, and your body will need the calories to help you keep your weight on and your strength up. Bring your favorite snacks to help supplement the hospital menu. If your friends and family are busy, don't forget that food delivery companies exist and can deliver orders to the hospital. Employees at all hospitals order out every day. Find out where the food delivery location is at your hospital, and start making some delivery calls.
I know getting off the couch when you are sick is the last thing you want to do. I know you are breathless, exhausted, spent, and are fighting hard. I'm with you! Just know that walking, even slowly, is great for your mental and physical health.
While I breathe, I hope.
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Adult with CF
Meagan was diagnosed with cystic fibrosis at 8 years old. She has been volunteering and fundraising for the Cystic Fibrosis Foundation’s Great Strides event since the early 2000s, as well as for CF Cycle for Life since 2015. She spends her days working in patient education at her local hospital, and is heavily involved in her care center’s CF patient advisory group. Her hobbies include traveling, photography, the beach, and spending time with her family and husband, Justin.
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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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