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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Individuals with cystic fibrosis require more energy to breathe normally, fight lung infections and compensate for poor digestion. For these reasons, they need more calories than people without CF.
Energy needs of people with CF are estimated to be 1 ½ to 2 times the needs of those without CF. A high-calorie, high-fat diet, with 40 percent of total calories from fat is generally recommended.1
There is no one specific recommended method to determine energy needs. The goal is usually sustained weight gain and growth in children and teens, and weight gain or maintenance for adults.
Just how much should you weigh? That answer will vary, largely depending on your current weight, your height and the nutritional goals that you and your care team set for your health.
To track weight relative to height in individuals with CF, your care team uses different measurements:
BMI is calculated by dividing your body weight in kilograms (kg) by your height in meters squared (m2). Calculate your BMI with this
online BMI calculator from the Centers for Disease Control and Prevention (CDC). You can also ask your CF care team about your BMI during your next visit.
The CF Foundation recommends that women maintain a BMI of at least 22 and men, a BMI of at least 23. For people under age 21, BMI should be at or above the 50th percentile on the CDC growth chart.
People with CF typically need up to twice the amount of daily calories as others who are of similar age and weight. To gain weight, you will need to take in about an extra 500 calories a day.
Spend some time thinking about what your weight gain goal should be. Discuss what you want to accomplish with the dietitian on your CF care team. Together you can figure out how to best reach your BMI goal.
Your dietitian can offer some simple ways to add calories to the food you already eat. We're not talking about anything out of the ordinary.
You can get those extra 500 calories from foods like these:
Or you can add 100 calories to each meal and snack, so that it equals 500 calories. Here are some 100-calorie additions that you can make:
As you can see, nothing on this list costs much or takes much effort to make. In other words, you can get your 500 extra calories eating on the go. Make sure that you schedule your snacks and have your enzymes with you, so you get the most out of every calorie you take in.
Remember, these extra calories should be part of a well-balanced diet. A 2012 study showed an overdependence on saturated fat intake in individuals with CF and a low polyunsaturated fat intake.2 As individuals with CF live longer, this imbalance increases the risk of heart disease. Make sure to incorporate unsaturated fats from foods such as avocados, nuts and oils. Walnut and flaxseed oils are good choices because they contain fats that reduce inflammation.
For a variety of reasons, many people have switched to a vegetarian diet. If you have CF, it is possible to create nutritious plant-based meals and snacks that pack the protein, fats and carbohydrates you need. Read
Cystic Fibrosis and the Vegetarian Diet to learn tips and recipes.
High-calorie supplements can be used to boost calories, but they shouldn't be used to replace meals. Instead, nutritional supplements should be taken along with a meal or as a substitute for a lower-calorie snack.
Nutritional supplements come in a variety of forms. You can get flavored powders that you can mix with milk, ready-made milk-based shakes, and high-calorie and high-protein juices. You also can get individual fat, carbohydrate or protein powders that you can mix into drinks. Talk to your CF dietitian about the right choice for you.
Every cell in the body needs water to work properly. You can get most of the water you need from what you drink, but you also can get water from many foods.
The amount of fluid you need depends on your age, weight, activity level, general health and the climate. Do not wait until you feel thirsty to drink water. By the time your brain signals you to drink, you may already be dehydrated.
Some symptoms of dehydration are headache, nausea, loss of appetite and fatigue. You also can tell if you are dehydrated by looking at the color of your urine. Urine should be clear or a pale yellow. If your urine is dark yellow or brownish, you are not getting enough fluids. Vitamins and medications may temporarily affect color. Your CF dietitian can help you figure out how much fluid you need each day and help you decide on the best sources.
All the beverages in the table below are good sources of water.
In addition to beverages, many foods have lots of water.
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