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.
Like vitamins, minerals also help with normal growth, function and maintenance of good health. Individuals with cystic fibrosis can be deficient in these minerals.
Calcium, iron, sodium chloride (salt) and zinc play significant roles in your body. Deficiencies in any of these minerals can cause everything from bone disease to anemia.
Why do I need it? Calcium helps
build strong (hard) bones and teeth, keeps your nerves and muscles working correctly and helps your blood clot. If you do not get enough calcium from food or supplements every day, your body will take calcium from your bones. When you lose too much calcium from your bones, you are at risk for breaking them. You could break ribs during chest physical therapy, while coughing or break a bone during a fall.
How do I get it? It is found in dairy products, some green vegetables and almonds. Calcium supplements are available. Your body can absorb only about 500 mg of calcium at a time, so spread your calcium sources throughout the day.
much do I need? The CF Foundation recommends that you get the amount of calcium listed below. The amount of calcium listed is the total amount from your diet plus any supplement you use. The results of your of your dual-energy X-ray absorptiometry (DEXA) scan may show that you need more calcium. Check with your CF dietitian.
do I need it? Iron is responsible for carrying oxygen from the lungs to all the cells in the body. If you don’t have enough iron in your blood cells, you will have anemia, which can make you feel tired, cold, dizzy and irritable. Iron deficiency is common in CF.1
do I get it? There are two forms of iron in food -- heme and nonheme. Heme iron is found in animal protein such as beef and beef liver. Nonheme iron is found in non-animal protein foods such as lima beans, kidney beans, lentils, dark green vegetables and enriched and fortified cereals. The body is better able to
absorb heme iron, but both types of iron are important for overall health. Nonheme iron and iron supplements are absorbed better if taken with a vitamin C source such as orange juice or another vitamin C-rich food.
much do I need? There are no specific recommendations for daily iron intake for people who have CF. Most people can get enough iron from food, but sometimes an iron supplement is needed. Your CF care team can determine if you are anemic by conducting a blood test and determine whether you need an iron supplement.
do I need it? Sodium chloride is also called salt. Salt plays an important role in maintaining fluid balance in the body, which means keeping the right amount of water in the right places. Salt also helps muscles contract. Not getting enough salt can interfere with growth; reduce appetite; and cause stomach pain, weakness, muscle cramps, nausea and headache. People with CF lose a lot of salt in their sweat, so they must eat more salty foods, especially during hot, humid weather.
do I get it? Table salt is the best source, along with foods that are processed with salt, such as bacon and pickles. Fresh foods such as meats, chicken, fish, fruits, vegetables, rice and pasta have very little salt; but they are high in salt when they are processed
into canned and boxed soups, vegetables, pastas and frozen dinners. Make sure to read food labels and use the saltshaker to add extra salt.
much do I need? No one is sure how much salt people with CF need; the usual recommendation is to eat salty foods and use the saltshaker freely at meals and snacks. People with CF who play or exercise outside in hot weather may want to add 1/8 teaspoon of salt to 1 1/2
cups (12 ounces) of a sports drink, such as Gatorade®. Infants with CF should get 1/8 teaspoon of salt daily until they are 6 months old. Parents then should increase it to a 1/4 teaspoon of salt daily. It is important not to use too much salt, so ask your care team if you have any questions.
Why do I need it? Zinc has many important daily functions in the body, from growth and healing to taste and appetite. Zinc helps you fight infection, heal wounds and develop sexually. Zinc also helps the liver release vitamin A into the blood. A deficiency in zinc has been linked to lower pulmonary function and
bone disease in individuals with CF.1
How do I get it? The best food sources are oysters, beef and beef liver. Other good sources include high-protein foods such as turkey, cheese and milk. Many breakfast cereals are fortified with zinc. All forms of multivitamin supplements designed for people with CF have zinc, but not all over-the-counter
multivitamins do. Look at the label of the multivitamin you are taking and make sure it contains zinc.
How much do I need? There are no specific recommendations for daily zinc intake for people who have CF.
1 Leonard, Amanda. Cystic Fibrosis Nutrition: Outcomes, Treatment Guidelines, and Risk Classification. In: Diet and Exercise in Cystic Fibrosis. San Diego, CA: Academic Press; 2015:27-34.
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