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.
More women with cystic fibrosis are reaching reproductive age, becoming pregnant, and delivering babies. Nutrition before and during pregnancy is essential for all women.
If you are considering pregnancy, it is important to receive counseling, which your CF care team can help arrange. This will allow your obstetrician to give you advice on improving lung function and nutrition before you start trying to get pregnant. If you have
CF-related diabetes (CFRD), it is important to have good control of your sugars before you become pregnant.
It is recommended that women with CF have a
body mass index (BMI) of 22 or higher. A lower BMI before pregnancy is associated with more hospitalizations later and a greater need for intravenous (IV) antibiotics. If your BMI is below 18, it is important to improve your diet before you get pregnant. Your CF care team can help you with this.
There is no standard nutrition plan for women with CF who are pregnant. You must be assessed individually by your CF care team before, during, and after your pregnancy.
In general, your dietitian will follow recommendations for pregnant women without CF and modify them on the basis of your individual needs. All pregnant women are advised to
Normal weight gain for pregnant women without CF is between 25 and 35 pounds. Women with CF are at risk for inadequate weight gain or weight loss during pregnancy because of the increased nutritional demands. Weight is more important than pancreatic status in achieving the best outcomes for you and your baby. Therefore, if you maintain an adequate weight, you are more likely to have a successful pregnancy.
Many women are advised to drink supplements and aim for higher-calorie diets. Some women may have to use
tube feeding to keep their weight up during their pregnancy. IV feeding -- called total parenteral nutrition -- may be necessary if a woman has inadequate weight gain, weight loss, nausea, and vomiting. IV feeding also may be required for women who are pancreatic sufficient and develop an inflamed pancreas (pancreatitis).
If you are pancreatic insufficient, you must continue to use pancreatic enzymes with all meals, snacks, and drinks containing fat and protein. Since 2009, potentially harmful
phthalates have been removed from pancreatic enzymes. No research has shown that hypromellose phthalate, which is used to coat some enzymes, is harmful.1
Constipation: This is very common for all women during pregnancy, but CF puts you at higher risk for constipation. If you notice a decrease in the number or amount of your normal stools, call your doctor. To prevent this, you can try to drink more water, eat more vegetables and fruits, and add fiber to your diet. Your CF care team may recommend the use of stool softeners or laxatives while you are pregnant.
Gestational Diabetes: You will need to be closely monitored for gestational diabetes, a condition that can occur in all women. Diabetes can increase your risk for a worse outcome during pregnancy. If you already have CFRD, monitoring and controlling your blood sugars is critical. If you are taking insulin to control your diabetes, your insulin requirements may change when you are pregnant.
Vitamin A (retinol) Toxicity: High levels of vitamin A, especially in the first three months of your pregnancy, can be associated with abnormal development of your baby. If you are taking extra vitamin A supplements, your obstetrician will have you stop taking them during your pregnancy. Discuss your CF vitamins with your care team and your obstetrician.
You can breastfeed your baby, but it can be tiring so you may have to find a compromise that works for you and your baby. Talk to your doctor to make sure the medication you are on is safe because your baby will consume some of it during breastfeeding.
Maintaining good nutrition and hydration is important if you are breastfeeding. Women who are breastfeeding are advised to drink an extra 4 cups (1 liter) of fluid and consume 500 additional calories per day.
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Michel, Suzanne H, Mueller, Donna H. Nutrition for pregnant women who have cystic fibrosis. Diet and Exercise in Cystic Fibrosis. San Diego, CA: Academic Press; 2015:3-10.
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