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.
The thick, sticky mucus that your body produces makes it hard to absorb fat and nutrients, which is why a good cystic fibrosis diet is one that is high in calories and high in fat.
People with cystic fibrosis need extra calories for several reasons. Although they take pancreatic enzymes, they still aren't able to use 100 percent of the energy they consume because enzymes cannot break down everything they eat or correct their problems with absorbing nutrients.
Fighting infections and coughing on a regular basis also burns extra calories. Maintaining a healthy weight -- and sometimes increasing it -- is key to fighting infection and keeping your lungs and body strong. By making small changes in your daily routine, you can make a big difference in your weight.
Give yourself time to plan. Before you go to sleep, think about the busy day ahead. Where will you be spending your time? Where can you easily stash food? Is there a refrigerator nearby? Microwave? How about a place to eat? Will you have enough enzymes?
Think about “packability.” Plan meals or snacks that you can carry in your backpack, purse, or briefcase and store in your desk drawer, locker, or a cooler in your car. Buy a variety of foods so you don't get tired of eating the same foods every day.
Cook once to eat three times. When cooking, make enough to pack a meal for tomorrow's lunch or use plastic containers to freeze meals that you can easily “grab 'n' go.”
Use a slow cooker. For breakfast, overnight oatmeal made with heavy cream and dried fruit and nuts is a hearty start to the day. If you find that you have more energy earlier in the day, make dinner in the slow cooker so that at 5 p.m. you don't settle for pizza or fast food.
If you are cooking for only one or two people, look for magazines and recipe books designed for smaller portions so food doesn't go to waste. Or, make a full portion and freeze part of it for when you're not feeling up to cooking.
The webcast below highlights the following information:
Organize your kitchen so that everything you need for “grab 'n' go” snacks and meals are within arm's length. Stock up on things like paper bags, plastic bags, napkins, and food containers.
Create a shelf in your kitchen or refrigerator just for your “grab 'n' go” favorites.
Keep plastic containers on hand to store meal-sized portions in the refrigerator or freezer. In the morning, just grab a filled container to take to work or school or wherever you go.
Avoid wandering aimlessly around the grocery store by planning ahead. Plan out your menu for the week so you have what you need on hand and don't have to play the “What's for dinner?” game.
Many cooking websites provide creative ideas for menu planning, such as theme meals (Taco Night or No-Meat Mondays). Thinking ahead ensures you have more nutritious and satisfying options.
Buy peanut butter, jelly, cream cheese, and other foods in single-packet servings you can just toss in your bag. If you have trouble finding these in your grocery store, there are countless varieties available online at restaurant supply stores. (Use the search phrase “restaurant supplies condiments.”)
To save, buy in bulk. You can save money by buying in bulk at discount stores and individually wrapping foods yourself in plastic wrap, plastic bags, or foil.
Read food labels. Food labels will help you learn to choose foods that meet your goals. For more on food labels, see the U.S. Food and Drug Administration's website.
Keep an eye out for new ideas. Just look around you. “Grab 'n' go” options are everywhere. Check out the selection in convenience stores, vending machines, corner markets, food stands -- even bookstores and sporting events.
Eating should be enjoyable. Planning your meals and snacks ahead of time can help you avoid added stress or going hungry during any part of the day. The following ideas can inspire you and even boost your appetite.
You never know when you're going to be held up or stuck somewhere -- carry a snack with you. Easy-access snacks are particularly important for those with CF-related diabetes.
Keep these snacks cool with an ice pack in an insulated lunch bag or cooler:
Keep these anywhere:
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