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.
Managing your blood sugar if you have cystic fibrosis-related diabetes is difficult, but the glycemic index can help.
Gretchen M. Garlow, M.S., R.D., L.D.N., C.N.S.C.
January 30, 2017
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This is a very familiar scenario for me: I receive a phone call from an individual with CF. “HELP! I was just told I have diabetes, and now I have no idea what to eat.”
Many people with cystic fibrosis-related diabetes (CFRD) are unsure about what to eat to manage their blood sugar levels. In addition, people with CF need to balance controlling blood sugar while avoiding unintentional weight loss, which can lead to loss of lung function.
Meal planning techniques that help manage blood sugar include counting the total carbohydrate content of a food or meal, called carbohydrate counting. However, there are two other meal planning methods that are worth discussing in detail: the glycemic index* and the glycemic load.
The glycemic index of a food indicates not only how high, but how quickly the food item can increase blood sugar.
Other factors can affect a food's glycemic index number: the amount of fiber or fat in the food, how much it has been processed, the method of preparation and the specific variety of the food. In addition, some foods can offset the effect that high glycemic index foods have on blood sugar, if the foods are eaten together, as shown in the table below.
The glycemic index does not tell you how high your blood sugar will increase when you eat a particular amount of a food or what happens with combination foods. To figure that out, researchers came up with a second number called the glycemic load.
What is glycemic load?
The glycemic load is a number that indicates how a food will affect blood sugar based on how quickly the food delivers glucose and the actual amount of glucose in the food. The glycemic load number is a combination of glycemic index and carbohydrate content. The glycemic load of a food is considered a more realistic and accurate picture of how the food will affect blood glucose.
The glycemic load of a food can change the perspective about a particular food completely. For example, carrots have a high glycemic index number (about 92), but a low glycemic load (6).
What method do you recommend to control blood sugar?
Use the method of meal planning that works best for you. Factors other than food can affect your blood sugar, such as the amount of enzymes you take and how long food remains in your stomach, and you may need to experiment. All of these options require you to read product labels and learn new skills.
Managing a special diet is hard. If your blood sugar is difficult to control -- or is out of control -- I would suggest a more defined and limited diet. If not, I encourage you to use the easiest way for you to balance and control the carbohydrates in your diet while maintaining adequate calorie intake.
Believe it or not, there's an official website for the glycemic index, maintained by the University of Sydney, that allows you to enter a food name to learn its glycemic index and glycemic load numbers. You can also sort food items based on glycemic index and/or glycemic load.
This table, originally published in the journal Diabetes Care, lists the glycemic index and glycemic load for more than 1,800 items.
I hope you have found this interesting and useful. If you have any questions, please submit them to email@example.com, and I will try to answer them in another blog post.
*This blog is in response to specific questions from individuals with CF who are interested in knowing about the glycemic index. The glycemic index does not necessarily reflect the CF Foundation guidelines for managing CF-related diabetes.
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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