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.
Dietitian Gretchen Garlow demystifies the hottest food trends for people with cystic fibrosis and invites questions for future blog posts.
Gretchen M. Garlow, M.S., R.D., L.D.N., C.N.S.C.
October 24, 2016
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As a dietitian for people who have cystic fibrosis, I frequently hear these questions about food trends:
All of these food trends mean something different for people with CF. I will try to answer some of those questions here.
Gluten -- which is a protein found in wheat, rye and barley -- is a big deal right now whether you have a gluten allergy (celiac disease) or not. Within the last 10 years, the number of gluten-free items at the grocery store and restaurants has multiplied. Previously, someone with celiac disease would have had to order foods from specialty companies because there was very little available at local supermarkets.
But, what about CF and a gluten-free diet? First, if you have both CF and celiac disease, you must follow a strict gluten-free diet to avoid damage to your small intestine. Second, the symptoms of celiac disease are similar to those who have CF but do not have a gluten allergy: abdominal pain, bloating, diarrhea, constipation and fatigue.
Before you eliminate a large group of foods from your diet, you should have a blood test to tell if you are allergic to a protein in gluten. If you do not have celiac disease, a gluten-free diet will not provide any health benefits.
There are some people who do not test positive for celiac disease but have similar symptoms and feel better when they restrict gluten. Because people with this gluten sensitivity also seem to have problems in their small intestine, researchers are focusing their current research on understanding this condition.
Sugar does not cause diabetes, and avoiding sugar does not prevent diabetes. Sugar is a carbohydrate. Carbohydrates are the body's preferred energy source, so some sugar can be included in the diet of people with CF.
If you have diabetes and are eating foods that have a high sugar or carbohydrate content, it will be best if you have them as part of a meal. The other foods will “dilute” the carbohydrate load. For example, eating a sugary food by itself as a snack will cause a quick, large rise in blood sugar but having the same food in a meal with protein and fat will cause a slower, smaller rise.
There is no official definition of what a clean diet is, but usually it refers to using minimally processed, whole foods (think eating a fresh apple versus an apple pie), and focusing on plant-based protein rather than animal protein.
But ... is a “non-clean” diet dirty or unhealthy? No. Honey from the comb can cause high blood sugar for people with diabetes just as easily as table sugar. A high-fat diet -- even though you are using organic, cold-pressed, extra virgin olive oil -- could be unhealthy for someone who does not need the extra calories. There are perfectly fine foods that could be part of a healthy diet that will not have a “clean” nutrition label, such as whole wheat bread, milk, tuna in a can and frozen vegetables. But some foods that claim to be “natural” and “clean” offer no special health benefit.
Is organic food worth the extra money? Organic means the food was grown and processed without any synthetic fertilizers, synthetic pesticides or genetic modification. For meats, it means no antibiotics or growth hormones.
Studies have not shown any additional nutritional benefit offered by organic products. Organic products have been found to be as likely to cause illness as nonorganic products, but with organic products, you would probably have a lower exposure to potentially harmful ingredients (fertilizers and pesticides).
Antibiotic residue in animal meat is banned by the U.S. Food and Drug Administration (FDA), so you are not eating antibiotics when you eat conventionally raised meat.
The goal of antibiotic-free meats is to limit antibiotic resistance among the bacteria in animals, as overuse of antibiotics has led to the development of antibiotic-resistant bacteria in humans. Having said that, there are no “superbugs” in humans that came from animals treated with antibiotics.
Still, the FDA has asked meat producers to use antibiotics only to treat something - not as a routine preventive measure -- and to have a veterinarian manage their use.
I hope you have found this interesting and useful. If you have any questions, please submit them to firstname.lastname@example.org, and I will try to answer them in another blog post.
Gretchen M. Garlow, M.S., R.D., L.D.N., C.N.S.C.
Dietitian, Massachusetts General Hospital
Gretchen works for Massachusetts General Hospital where she is responsible for the nutritional care of patients in the adult and pediatric cystic fibrosis centers and in the lung transplant program. She is a strong advocate for her patients, and she enjoys attending fundraisers, especially those featuring her patients. Gretchen received a bachelor’s degree in nutrition and chemistry from Texas Tech University in Lubbock, Texas. She completed a dietetic internship at Massachusetts General Hospital in Boston. Gretchen received a master’s degree in nutrition from Framingham State University in Framingham, Mass., and she maintains advanced certification in nutrition support. Gretchen lives on the North Shore of Massachusetts with her husband, two sons and Labrador Retriever, Molly.
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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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