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.
Holiday foods may be wonderful to eat, but they also can be very high in fat. Making sure that you take enough enzymes with these special meals could help you avoid unnecessary issues during a time reserved for loved ones.
Suzanne Michel, M.P.H., RD, LDN
November 25, 2015
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The holiday season will soon be here and with it comes many occasions to feast. Often what we eat reflects the traditions of our families. The foods that are served may only be prepared at holidays and no other time of the year. Special holiday foods may be wonderful to eat, but they also can be very high in fat.
At Thanksgiving, there might be that special sweet potato recipe made with many sticks of butter. On Christmas Eve, your family may serve the traditional seven fishes that could be fried or dipped in butter. Some families include macaroni and cheese, or lasagna, alongside their turkey or ham. Fried latkes (potato pancakes) or doughnuts are often served during Hanukkah.
All these foods are delicious, but are also loaded with fat. In addition, these big meals may take much longer to eat than usual. For those who take enzymes, the foods served and the length of these meals may be a challenge.
So, what do you do about enzymes?
If you don't take enough enzymes with these special meals, you may experience all of the symptoms of malabsorption.
The undigested foods will sit in your intestine causing you stomach pain, and your BMs may become large, loose and smell really bad. You may also experience really bad gas.
If the food you eat is not digested properly because you didn't take enough enzymes, the nutrients in the food -- including protein, essential fatty acids, vitamins and minerals -- will not get absorbed into your blood stream to help you stay well. So taking the right amount of enzymes with a big meal is important and allows the nutrients in the food to be used by your body.
If you take enzymes, here are some of the things that you may have been taught:
Also, do not make any changes to your usual dose without speaking to your center registered dietitian (RD) first. You should also talk with your center RD about eating large, fatty holiday meals that may take over an hour to eat.
Here are some additional questions to ask your RD:
If you are traveling during the holidays, have a plan to keep your enzymes nearby. Be careful not to store your enzymes in a hot or very cold area, such as a car. Extreme temperatures are not good for enzymes and makes them less useful. Also, it is important to keep them dry. Think about keeping a meal and snack dose with you at all times and more enzymes in an area that you can get to in order to refill your pill case.
For more information about the correct use of enzymes, talk to your cystic fibrosis center RD and visit CFF.org for additional resources.
Suzanne Michel, M.P.H., RD, LDN
Registered Dietitian and CF Nutrition Specialist
Suzanne is a registered dietitian and clinical assistant professor at the Medical College of South Carolina, a leading CF center in Charleston, S.C. Suzanne has more than 30 years of experience working directly with people who have CF.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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