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.
After my grandmother's health improved on a plant-based diet, I decided to try it for myself with the help of my cystic fibrosis care team dietitian. Not only are my lung function and energy better, but my weight is stable too.
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I never thought I'd follow a plant-based diet.
Growing up with cystic fibrosis and pancreatic insufficiency, I was encouraged to eat lots of fat and calories to keep my weight up. The recommended lunch for a kid with CF? A double cheeseburger and fries, polished off with an ice-cold milkshake.
In my mid-20s, I learned more about the pitfalls of the standard American diet -- how processed foods and saturated fats could lead to serious chronic
illness, like heart disease, hypertension, and Type 2 diabetes.
I worried that just as we're living longer with CF, we'd all end up with heart disease thanks to a lifetime of burgers and fries.
And, heart disease runs in my family.
A few years ago, my grandmother, who has congestive heart failure, saw her heart health transform when she switched to whole, plant-based foods. Her heart function went from 10 percent to 45 percent.
I knew CF wasn't the same as heart disease and couldn't be reversed, but I wondered if I could still benefit from eating this way. At least one study shows a plant-based
diet may improve digestion and reduce inflammation.
I decided to give it the old college try -- add more fruits, vegetables, tubers, whole grains, and legumes to my plate and avoid meat, dairy, eggs, and processed foods.
I went to clinic braced for a lecture about needing animal proteins and fats, but it never came. I sat down with the nutritionist at National Jewish Health in Denver, and she showed me how I could meet my unique dietary needs with plant-based foods.
Plant-based foods can lead to weight loss. They're lower in calories than standard American diet fare. But, with sticky mucus making it harder for my body
to absorb nutrients and fat, I need those calories and fat! I'm also on Orkambi, so I have
to get 20 g of fat with each dose.
The clinic nutritionist ran through a list of plant-based fat sources with me, which included:
Now, instead of bacon and eggs, I have hummus and avocado toast or peanut butter green smoothies in the morning. My body mass index (BMI) and weight are stable.
A whole food, plant-based diet has minimal sodium. This is great for those looking to lower their blood pressure, but I lose salt
and need 2-3 times more than the average person. The American Heart Association recommends less than 1,500 mg of sodium a day for the average adult.
At clinic, we discussed aiming for 4,000 mg a day. (Please check with your CF care team about the proper amount of sodium for you.)
I add salt to my home-cooked meals, either by cooking with a splash of organic soy sauce (1 tablespoon has 700 mg of sodium) or sprinkling on some sea salt (1 teaspoon has 2,325 mg). And I'm extra cognizant of my salt intake after exercising.
How do you get protein without meat? It's easy. The nutritionist sent
me home with a list of plant-based protein sources, including:
No protein deficiency here. My blood work has come back normal at every clinic visit.
I have osteopenia, so calcium was a concern. Turns out, you can get calcium from plant-based food, such as kale and broccoli. I do, however, continue to take the calcium supplements I was on before changing my diet.
As for my bone health, it's improved. The osteopenia in my wrist went away since I changed my diet. (I do still have osteopenia in the base of my spine).
My unpredictable stomach has been a source of embarrassment and pain for most of my life. Today, my gut health is better.
My tummy isn't perfect, and I'm still pancreatic insufficient, of course. I get stopped up occasionally, but mostly I'm regular. Like clockwork every morning, if you want to know. I feel lighter, less bloated. And, I've had zero embarrassing public restroom
My energy and lung function are also up. CF can still kick my butt -- but not as often. I'm not sluggish after meals. I sleep better. I am less fatigued throughout the day. Thanks to this newfound energy, I exercise more, which has led to improved lung
Everyone with CF has different needs, and I get that. This disease is complex, and some folks struggle more with weight than I do. But, if you're interested in making lifestyle changes, do your research, and talk with your care team dietitian to come
up with a game plan that works for you.
There's so much we can't control about CF, but diet, exercise, and a treatment routine all help me to better manage my disease. Two years into this plant-based life, I'll take a higher FEV1 and fewer stomachaches over a cheeseburger and fries any day
of the week.
Adult with CF
Ali has been a CF advocate for most of her life, raising funds with her family for Team AliKatz. She and her husband, Austin, are on the Cystic Fibrosis Foundation Tomorrow’s Leaders board in Portland, Maine. Ali also works full-time for MamaSezz, helping people feel and eat better with plant-based meal delivery. She’s a graduate of the T. Colin Campbell Plant-Based Nutrition Certificate Program. She lives on the coast of Maine with Austin and their best friend/dog, Sally. Connect with her on Instagram or her blog.
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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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