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.
Good eating habits last a lifetime. Remember to compliment and reward good eating habits. If mealtime battles drag on and affect your child's growth, consider tube feeding to ensure good nutrition.
Getting children to eat often can be a challenge. When they have cystic fibrosis, this can be a real source of concern.
Positive reinforcement and engagement can go a long way to bringing peace back to the dinner table. If you are becoming frazzled by daily battles, try some of these tips.
Make sure everyone at the table knows ahead of time how to respond to your child during mealtimes. Getting different responses from people will confuse your child and slow down his or her ability to learn what is expected at mealtime.
There are many ways you can put the fun back into mealtime. Check in with your CF dietitian who may have ideas that have worked with other families, or ask to be connected to another parent who has found ways to improve eating.
For young children, play with food presentation by making “food animals.” Get ideas online by searching for “food presentation for toddlers and images.”
Take older children to the grocery store to help pick out food they might like. Create games, such as a “calorie contest” to test their food knowledge and get them thinking about meals in a different way. In this game, have your child guess the number of calories and grams of fat are in a particular food. Reward them when they get an answer correct.
Another game could be tied to calcium intake. Show your child pictures of two food items and have your child choose which one has more calcium.
Have an indoor picnic or make a pretend restaurant.
Did you know it takes children up to 8 to 12 times (and sometimes more) before they develop a liking for a food? Most parents stop trying a new food after three or four times. Offering foods many times can increase the likelihood that your child will start liking them.
When your toddler refuses to eat something:
Refusing food often happens on days that your child is not feeling well. Because children with CF can lose weight quickly, it is important to have a plan for managing sick days. Check in with your CF dietitian first to find the best ways to get your child to eat, and then use these tips:
If nothing seems to help and mealtime continues to be a challenge, talk to your CF care team about the possibility of a gastronomy tube, which also is known as a “G-tube.”
In tube feeding, a tube is inserted directly into the stomach through a small port that is surgically implanted. Some people choose a high-calorie liquid to go into the stomach or intestine at night. The tube is disconnected during the day and closed. Other people use a syringe to administer portions of the high-calorie liquid at different times throughout the day. There are many different approaches to using the tube, and there is no perfect way.
Tube feedings supplement eating during the day. Parents report that tube feeding removes the stress and tension at mealtimes, increases their child's weight faster and helps the family focus on better things, such as strengthening family relationships.
A 2016 study showed that if a parent caregiver has depression, their children with CF are less likely to take their enzymes.1 If you have a child with CF and are experiencing symptoms of depression, please talk to your health care provider about treatment.1 Barker DH and Quittner AL. Parental Depression and Pancreatic Enzymes Adherence in Children With Cystic Fibrosis. Pediatrics. 2016;137(2):e20152296
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