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.
A high-calorie, nutrient-dense diet and exercise leads to healthy, strong bones for people with cystic fibrosis. Good nutrition also means taking vitamin and mineral supplements and sometimes medication.
Weight-bearing exercise and resistance exercise such as walking, jogging or lifting weights are great for bone health. Exercise early in life may build more bone. Your CF care team can help you build an exercise program.
In addition, avoid smoking, which hurts your lungs and bones and can cause osteoporosis.
Low weight and poor nutrition cause weak bones. It is important for children and teens with CF to gain and keep their weight up and eat healthy. Proteins, also known as amino acids, are the building blocks for all body tissues, even bones.
In addition to protein, the minerals calcium, zinc, magnesium, phosphorus and fluoride and vitamins A, D and K are essential to build and keep strong bones. Your CF care team may prescribe calcium or vitamin D supplements if you do not get enough through your diet and your levels are low.
People with CF should avoid alcohol and caffeine because they lower bone density.
Calcium plays a big part in forming bones and keeping them strong. Children and teens need the most calcium because bones grow fast in those years. People with CF age 9 years and up should get 1,300-1,500 mg of calcium a day.
Calcium can decrease how well some medicines work if taken together. Ask your CF care team which medicines can be taken with calcium.
It is best to get your calcium from foods. Milk, milk products (cheese, yogurt, ice cream), and calcium-fortified plant-based milks are great sources of calcium and calories. Other good calcium sources are foods made with dairy products, such as macaroni and cheese, puddings and custards, and creamed soups. Dark green vegetables, almonds and calcium-fortified orange juice and cereals have some calcium. If you cannot get enough calcium from foods, ask your CF dietitian about calcium supplements. Your body can absorb only about 500 mg of calcium at a time, so spread your calcium sources throughout the day.
In addition to calcium, it is important to maintain the right levels of magnesium and zinc. Low magnesium blocks the body's use of calcium, and low zinc levels can cause poor growth and slow puberty.
Vitamin D helps our bodies absorb calcium to make bone. Your body makes vitamin D from being in the sun. Being in the sun for 5-10 minutes, 2-3 times a week, can raise vitamin D levels. Be careful not to stay out in the sun too long to avoid sunburn.
Fortified milk and cereals, egg yolks and fatty fish are good food sources of vitamin D, but people with CF don't easily absorb vitamin D from foods. They should take vitamins made just for people with CF like Vitamax™, AquADEKs® or MVW®. These vitamins have water-soluble vitamin D, which is easier to absorb.
Vitamin D levels in the blood should be checked once a year and after taking extra vitamin D as prescribed. If the amount of vitamin D in your blood is low, you may need to take more.
Vitamin K is a fat-soluble vitamin needed for bone density. You can get vitamin K in CF-specific vitamins. Vitamin K also is made in the intestines by bacteria. Good food sources include leafy greens such as cabbage, broccoli, kale and spinach.
If you have osteoporosis, medicines called bisphosphonates strengthen bones. These medicines help bone-building cells work better. They can stop osteoporosis from getting worse or reverse it. They are not often given to kids under age 7. They should be used only in those with severe osteoporosis or known fractures from weak bones.
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