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.
At this age, your child with cystic fibrosis is ready to transition from breast milk or formula to whole milk or a high-calorie supplement. Encourage independent eating. Create a consistent schedule and mealtime expectations.
At 1 year of age, your child with CF will be able to eat and drink more foods on his own. The more practice your child gets with eating and drinking (especially new things), the more options you will have for meeting nutrition and calorie recommendations made by your CF team.
Most toddlers need 1,000 to 1,300 calories daily; however, a toddler with CF may need 30 to 50 percent more calories, or 1,300 to 1,900 calories daily.
After the first year, most children do not need to rely on infant formula or breast milk to achieve good nutrition. At this point, children can have whole milk to drink. Children with CF should not be offered reduced-fat milk, as the greater fat content and calories of whole milk are needed for good growth and nutrition.
Here are some other tips:
At this age, your child can eat any food, as long as it is in a form that is safe for him to chew and swallow. This includes soft and ground meats, chopped finger foods, soft-cooked vegetables and well-cooked pasta. Boost calories by adding butter or olive oil, cheese, cream, gravy, mayonnaise, dressing or peanut butter.
Here are some examples of high-calorie finger foods:
Let your child use a child-sized spoon. He can practice holding it as you feed him. The more practice, the faster he will learn to eat on his own. Try offering spoon-thick foods such as these:
Be sure to offer small safe pieces of finger foods and supervise your child so he doesn't choke. Chunks of hot dog, raw apples, grapes, carrots, raisins, candy and popcorn can cause choking.
Breakfast gets the body ready for the rest of the day. Try to offer two different types of foods for breakfast, such as scrambled eggs and bacon or sausage, or fruit packed in heavy syrup.
You can offer three different types of foods for lunch and dinner. Try offering food such as bite-sized chicken, green beans with margarine or butter, pasta or a grilled cheese sandwich and soft fruit.
Offer two to three snacks a day. Always serve snacks that require enzymes so your child can get the high-calorie and high-fat diet he needs to grow. Toddlers with CF lose more salt when they sweat than toddlers who don't have CF. Add salt to your child's food and plan salty snacks, like pretzels.
Try not to let your child “graze” (eating and drinking small amounts throughout the day). Allowing your child to eat outside of regular meal and snack times can lead to many challenges. It makes it harder to give enzymes if he is always eating. Your child will also not be as hungry during meals. This can lead to eating less at meals.
If your child is in daycare, plan high-calorie meals and snacks with the daycare center staff. Tell them why your child needs extra calories. You may have to send extra high-calorie foods, if the daycare menu can't be changed. Daycare center staff should give enzymes before meals and snacks and should report changes in bowel movements.
Some toddlers don't want food and enzymes mixed together. If you are having this trouble, try giving your toddler just the beads in a spoon or small medicine cup before meals and snacks. Enzymes should not be chewed or crushed. Do not put beads in food ahead of time for use later that day.
If your toddler refuses enzymes, try giving him some choices and control. Let him open up the capsules and pour the beads out. Let him choose the food and mix it with the beads.
If your child still refuses to take enzymes, talk to your CF dietitian. When fat is not absorbed, fat-soluble vitamins are not absorbed. Your toddler may need a prescription for special multivitamins that have more easily absorbed forms of vitamins A, D, E and K. Some children refuse the liquid multivitamin but will take it in a small amount of juice or food. For older children, there are chewable multivitamins.
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