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.
Cooking for a family of three -- one of us with CF and all of us having different diets -- makes mealtime complicated. It's taken some time, but I finally found the key to satisfying our whole family's needs at dinnertime.
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Every Saturday morning I take inventory of our family's food supply: I open the fridge, take note of leftovers, check the freezer for quick heat-and-eat meals, scour the pantry to see what staples we have left, and develop my game plan. Each week I'll
ask: What does our schedule look like? What meals will we eat? How much food prep can I get done tomorrow? What items will I need from the grocery store? What can I order for curbside delivery, and what items will require a mad dash through a grocery
Some parents can commiserate about the dread of grocery shopping and planning dinners they hope will appease the kids. Yet, navigating this already tricky situation becomes even more challenging when taking into consideration different dietary needs.
While my husband does not like much from the world of vegetables, I am a vegetarian -- technically, pescatarian.
However, our daughter, Cadence, must follow a high-salt, high-fat, high-protein diet because she has cystic fibrosis.
Everything I have to limit in my own diet is encouraged for my daughter's. How do I plan dinners to meet our varying needs?
I am not a nutritionist -- and really, for a vegetarian, I don't eat as many vegetables as I should. Thankfully, I am a planner who loves to cook; so, over time I experimented and learned tricks along this journey. I discovered I could start with a vegetarian
base, upon which I can add the salt, fat, and extra protein for Cadence.
Since I hate to waste food, Saturdays are reserved for finishing off any leftovers and freezing anything I can. Not cooking on Saturdays means I can use this day to plan, shop, and start food prepping.
Sundays are days of rest, so I love to use the slow cooker in the fall and winter. A black bean chili or vegetable stew makes a great meal for me with leftovers I can eat for lunch all week. To appease my husband, I can pick up a rotisserie
chicken to cut up and add to his bowl. For my daughter, in addition to the chicken, I add butter (salted, of course) and cheese, sour cream, or yogurt. On Sundays during the spring and summer my husband grills burgers or steak for him and Cadence,
while I enjoy a BOCA Burger. We also like to grill asparagus and corn, which is easy to load up with butter and salt for Cadence.
On Mondays, Cadence has dance classes in the early evening, so I need something fast and simple. Salmon is a favorite and it's a fatty fish that she enjoys. I usually
serve it with brown rice (pre-cooked is much quicker) and green beans that come in a convenient microwave bag for steaming. I throw in more salt and butter (thank goodness for our Southern roots) and Cadence has her high-salt, high-fat, high-protein
meal, while I can leave out these additions for my own healthy meal.
Tuesdays, of course, call for tacos -- or at least taco bowls. I use up the leftover brown rice from the night before, heat a can of black beans, and prepare a homemade guacamole that my husband and daughter cannot get enough of. Any
leftovers from the weekend's rotisserie chicken make a protein-packed addition for my husband and daughter, and condiments such as salsa, sour cream, and shredded cheese allow me to control the portions of my bowl while piling on more for Cadence.
Sometimes she asks for tortilla chips to dip, adding yet more fat and salt -- win!
Wednesdays are great pasta nights. Whole wheat spaghetti or penne cooks to the perfect al dente while I reheat some homemade marinara from my freezer. After I plate up the pasta and sauce, I add a little (or more) shredded parmesan and
pop frozen meatballs in the microwave for my husband and Cadence. The spaghetti with sauce is plenty for me, but occasionally I'll add some “meatless meatballs” -- yes, that paradoxical concoction does exist.
Thursdays are busy with swim lessons, so nothing is quicker than shrimp (sometimes leftover steak or chicken from the grill) with a pre-made Caesar salad kit with extra dressing on the side. Cadence calls it “salad and dip,” because she
loves to dip the lettuce into the dressing, often licking from the bowl when we're finished. I don't mind, since that dressing easily has 9 grams of fat in a tablespoon. I limit my serving, while Cadence usually gets double.
When Fridays finally come around -- and after a week of planning, prepping, and preparing a variety of meals -- I find myself exhausted and -- once again -- trying to decide: What's for dinner? Take out!
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of a child with CF
Rebekah lives with her daughter, Cadence, just north of Boston where she teaches high school English. She completed her undergraduate degree in English and received her master’s degree in teaching at the University of South Carolina. Since her daughter’s
diagnosis, Rebekah has also participated in fundraising for Great Strides and hopes to one day publish a memoir to help spread awareness. When she can find the time, Rebekah loves to go for runs, dance with her daughter, and curl up on the couch to
enjoy a cup of coffee and a good book. You can follow her story on Facebook.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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