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.
You will work with your cystic fibrosis care team to make a schedule that works best for you, whether that is between meals, all day or overnight.
Your CF care team can direct the kind of tube placement you may need, assist you with equipment and teach you how to care for your tube. Your dietitian will help you find the correct formula, calorie level and schedule for you. Your CF social worker can help answer insurance questions and discuss your feelings about this process.
Some feedings can be delivered with a pump, a hanging bag or a large syringe. Overnight feeding can range anywhere from 6 to 12 hours each night.
You will need to take pancreatic enzymes with your tube feeding to help you absorb the protein, fat, vitamins, and minerals in the formula.
Your dietitian will discuss with you the best way to take your enzymes. The main goal is to prevent malabsorption (oily, multiple, light-colored stools) and promote weight gain.
VIDEOS: Watch “Own Your Feeding Tube With Gunnar Esiason: Episode 1” to see how he manages his tube feeding.
Watch Jordan Scott manage her tube feeding.
With any new therapy, concerns may come up. Your CF care team can assist you with the equipment and help you find ways to overcome issues. Here are some common problems and solutions.
What to do:
The tube should flush with some resistance, but you should be able to give feedings, water flushes and dissolved medicines without difficulty.
If the area is red and sore, clean it with soap and warm water. Rinse around the area with plain water and pat dry.
If any areas appear crusty, gently soak or scrub them with soap and warm water on the skin and tube itself. If you prefer, you may use a solution of ½ hydrogen peroxide and ½ water applied with a cotton swab to help clean these areas. After cleaning, rinse with plain water and pat dry.
You will work with your CF dietitian to set calorie and weight goals. These should be based on your daily schedule and your overall health goals.
Unfortunately, when you lose weight you may be losing muscle along with body fat. Safe weight gain should include muscle gain, not just body fat gain. You should continue to exercise to maintain your muscles.
To make sure you gain and don't lose weight, continue to eat your regular meals. If you find that tube feeding is making you full and that you are not able to eat your meals, talk to your CF dietitian about coming up with a new plan.
Working with your CF care team and knowing what your health insurance plan will cover are both key. Some insurance companies cover the equipment that is needed but not the formula. This will need to be taken into consideration as you are deciding whether a feeding tube is right for you.
If you have questions about accessing or affording tube feeding supplies, CF Foundation Compass may be able to help. Also, talk to your CF dietitian and social worker who may be able to help you find supplies for free or at a reduced cost. To contact Compass, call 844-COMPASS (844-266-7277) Monday through Friday, 9 a.m. until 7 p.m. ET, or email firstname.lastname@example.org.
Education for your family and friends on the entire process will help you become successful. When others understand why you are making this decision, it will be easier for them to help. Your CF care team will educate anyone who is instrumental in your care.
You can tell your family and friends that tube feeding is not a sign of failure but rather a tool to help fight this disease.
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Cystic Fibrosis Foundation
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