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.
Your body needs vitamins to help it grow, function, and fight off infection. Try to incorporate foods rich in these vitamins and take a vitamin supplement, if necessary.
People with cystic fibrosis have trouble absorbing fats, which means they have trouble absorbing vitamins that need fat to be absorbed -- A, D, E, and K. These fat-soluble vitamins are critical to normal growth and good nutrition.
People with CF also need to get water-soluble vitamins, which include vitamin C and the B-complex vitamins, folic acid, biotin, and pantothenic acid. They are called water-soluble because they are easily absorbed with water in the body.
Besides eating a nutritious diet, you may have to take a CF-specific multivitamin supplement. Multivitamin supplements for people who have CF come in pills, softgel capsules, chewable tablets, or liquid drops. They contain fat-soluble and water-soluble vitamins to meet the needs of people with CF who take pancreatic enzymes.
Sometimes a member of your CF care team will ask you to take a single nutrient vitamin supplement, such as vitamin D. Most single nutrient vitamin supplements are available over the counter, although some require a prescription.
If you have questions about affording vitamin supplements, contact CF Foundation Compass by calling 844-COMPASS, Monday through Friday, 9 a.m. until 7 p.m. ET, or emailing email@example.com.
To get the most from your vitamin supplements, always take them with a meal or snack that contains fat and your enzymes. As with all products, always follow the directions you and your CF care team developed.
Vitamin A has many roles in health. It helps the immune system fight infections. It is needed for healthy skin, normal vision, and healthy intestines. Low levels of vitamin A can cause night blindness and skin disorders and raise your risk of infections. Low vitamin A also can be associated with zinc deficiency, which can impair growth.
Vitamin A can be found in animal foods such as liver, eggs, and milk, as well as in darkly colored fruits and vegetables including these:
Vitamin D helps build and maintain strong bones and teeth by maintaining the right amount of the minerals calcium and phosphorus in your blood. Without enough vitamin D, bones can become thin and brittle. People with CF are at risk for osteoporosis and osteopenia. Vitamin D also helps keep the immune and nervous systems working well.
Exposure to sunlight provides you with some, but often not enough, of the vitamin D you need. Many people with CF need to take extra vitamin D in addition to the amount provided in CF-specific multivitamins. Other good food sources of vitamin D include these foods:
Vitamin E is an antioxidant, which means that it protects compounds in the body from combining with oxygen. When compounds become oxidized, they become harmful to the body. Vitamin E also helps make red blood cells and keeps the nervous and immune systems healthy.
It is hard to get all the vitamin E you need from food alone. Some fruits and vegetables have small amounts. Most meat products do not have it at all. Vitamin supplements and the following foods can be good sources of vitamin E:
Vitamin K is best known for its role in helping blood clot. Without it, a cut could bleed for a long time and a small bruise could turn into a big one. Vitamin K also helps keep bones healthy. Some of the vitamin K you need is made in the intestines, but the amount can be reduced in people who take antibiotics.
All forms of multivitamin supplements designed for people with CF include vitamin K, but not all over-the-counter multivitamins do. If you are not using multivitamin supplements designed specifically for people with CF, be sure to check the ingredient label and choose one that contains vitamin K.
To make sure you get vitamin K in your diet, eat lots of dark green, leafy vegetables. Here are some good sources of vitamin K:
Vitamin B1 helps change carbohydrates into energy that the body needs every day. It is also necessary for the maintenance of healthy skin, the heart, and the nervous system.
The foods in the following list can help you make vitamin B1 a part of your daily diet:
Vitamin B2 (riboflavin) helps turn food into energy and repairs tissue. It also helps your body make healthy red blood cells. Low levels of vitamin B2 can lead to bad skin and itchy eyes.
Here are some foods that are good sources of vitamin B2:
Vitamin B3 (niacin) plays a role in metabolizing fats and is used to treat high levels of “bad” cholesterol. Vitamin B3 works with the other vitamins to keep your skin healthy and your nervous and digestive systems working right.
Although vitamin B3 is found in many foods, it is really common in poultry and dairy products. Here are some foods you can eat to get this vitamin:
Vitamin B6 plays an important role in the metabolism of amino acids (the building blocks of protein). It is also needed for proper functioning of the nervous system and production of hemoglobin, the part of red blood cells that carries oxygen throughout the body. A deficiency of vitamin B6 can cause depression or anemia.
If you don't like to eat vegetables, do not worry. A good way to get vitamin B6 is to eat chicken, pork, beef, and fish. You also can find B6 in these foods:
Vitamin B9 (folic acid) plays a role in the production of genetic material, in tissue growth, and in the proper formation of red blood cells. It is important for healthy cell division and replication, which is essential for growth. A deficiency in vitamin B9 can cause anemia, abnormal tissue growth, and birth defects.
Folic acid is found in many vegetables and fruit juices, but if these foods are cooked too long, they lose a lot of B9. That is why you may need a vitamin supplement plus a healthy diet with the following foods:
You need only a small amount of vitamin B12 in your diet, but that small amount protects your nerve cells. It is also needed to form red blood cells. Vitamin B12 deficiency can cause a type of anemia known as pernicious anemia, which is commonly found in the elderly and in strict vegetarians.
If you like beef and seafood, you are lucky. These foods are good sources of B12. But if you do not eat animal products, you may not get enough B12 and should take vitamin supplements. Here are some food sources of B12:
Vitamin C does hundreds of jobs in the body. It works hard to fight free radicals that can hurt your cells. Vitamin C also helps make collagen, a sticky substance that keeps your bones and muscles together, and helps blood vessels stay strong. It also can help heal a wound.
Our bodies need a diet rich in vitamin C foods to stay healthy. The good news is that vitamin C is found in many fruits and vegetables such as the ones listed below:
The enzyme maker, pantothenic acid, helps metabolize fats, carbohydrates, and proteins. It also helps make red blood cells and control the body's hormones. Low levels of pantothenic acid can lead to stomach cramps, vomiting, and tingling in the hands and feet.
It is easy to get the right amounts of pantothenic acid because it is found in many foods that are a part of a daily diet. Here are some ideas:
Some bacteria that live inside the body help you stay healthy. In fact, these “good” bacteria make a vitamin called biotin. Biotin helps metabolize fats, carbohydrates and proteins. You need biotin to keep your hair healthy.
There are lots of ways to get the biotin you need every day. In addition to the biotin that your body makes, vitamin supplements have good amounts. There are many common foods that have it as well, such as these:
Parts of this document were adapted, with permission, from material written by Suzanne Michel, MPH, RD, LDN.
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