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.
Women with cystic fibrosis can safely breastfeed without compromising their baby's health. However, there are still factors related to your own health that you will need to consider before you decide whether breastfeeding is right for you.
As a new mother, one of the first decisions you will need to make is whether you will breastfeed. Although early studies suggested that the breastmilk from mothers with cystic fibrosis had higher-than-normal levels of sodium, subsequent research has confirmed that women with CF can safely breastfeed their babies and provide them with the appropriate amounts of protein and sodium.
At the same time, breastfeeding is a tiring process that uses up many calories, which has certain implications for women with CF. By understanding the potential impact of breastfeeding on your health, you can ultimately decide if it is right for you.
Research has shown that there are many benefits to breastfeeding in terms of your child's health and development. However, it is also an exhausting process that will require extra calories.
Not only do people with CF have a harder time maintaining good nutrition than the average individual, but their caloric needs are also greater than those recommended for healthy people of the same age and gender. For this reason, it is important to talk with your CF care team before you decide to breastfeed.
In addition to good nutrition, there are other factors that you will need to take into consideration before making your breastfeeding decisions.
For example, some mothers with CF specifically choose not to breastfeed so that others can easily get up to feed their baby in the middle of the night, thereby allowing them to rest and get the sleep they need. Other mothers will breastfeed and then pump after nursing so that others can provide their child with breastmilk while they are away. Some parents choose to bottle feed and breastfeed as opposed to just breastfeeding.
No matter what you decide, it is important to find a compromise that works for both you and your baby.
Because breastfeeding your child takes greater amounts of energy and calories, you will need to work with your care team to ensure that your nutritional health is adequate to support breastfeeding. This means partnering with your CF nutritionist or dietitian to develop a plan that will provide enough extra calories for both you and your baby. You will also need to make sure that you are staying adequately hydrated by drinking extra fluids throughout the day.
Some women with CF may have trouble breastfeeding exclusively or with maintaining their weight. In these situations, it is important to take a step back with your care team and problem-solve to find an alternative method of feeding that works for you and your family.
It is possible for mothers to pass the medications they are taking to their baby through their breastmilk, so let your care team know if you are planning to breastfeed. Your care team can work with you and your pharmacist to evaluate your current treatment plan and ensure the safety of your medications.
Medications that were safe for you to take during pregnancy are not always safe for breastfeeding and vice versa, so partnering with your care team to closely assess your current list of medications is key.
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