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.
If you have cystic fibrosis-related diabetes (CFRD), the following are some tips to help you manage your treatment while traveling.
Keep your cystic fibrosis medications with you, including your insulin and supplies. If you take once daily, long-acting insulin, contact your CF center or endocrinologist to make any adjustments for visiting or traveling through different time zones. If you have syringes and needles for injections, ask your doctor to write a note explaining that it is medically necessary to carry these supplies.
When traveling, different factors such as increased physical activity or alcohol consumption can alter your blood sugar level. Make sure you have carbohydrates readily available to prevent hyperglycemia and hypoglycemia. If traveling with others, tell your travel companions that you have diabetes, and let them know signs to watch out for that may signal a drop or spike in your blood sugar.
When you're on vacation, your diet may be different than the one you follow at home. If you're traveling to a different time zone, you may be hungry at different times than mealtimes. Make sure you have access to food or snacks at all times, including during your flight. In addition, don't forget to always carry glucose tablets with you.
Alcohol can cause your blood sugar to get too high or too low. If you plan to drink alcohol on vacation, eat foods that contain carbohydrates when drinking and limit your nightly alcohol intake to one drink for women and two for men -- one drink is 12 ounces of beer, 4 to 5 ounces of wine or 1.5 ounces of distilled spirits, cordials or liqueurs. You must check your blood sugars more often while you drink alcohol. You may also need to check your blood sugar during the night, especially if you drank too much or you have been physically active while drinking.
People with CF are at risk of dehydration in hot climates, and if you have CFRD, you're at even greater risk. Drink plenty of water -- even when you're not thirsty -- with a pinch of salt added to it or energy drinks that have salt supplements. Also be sure to drink a lot of water (at least 400 ml) before exercising and, if exercising for a long period of time, rehydrate every 15-20 minutes. Salt tablets can also help you stay hydrated; ask your CF care team if you need them. If you are flying, in addition to drinking lots of water, be sure to also eat salty snacks and to keep moving. Due to the low humidity on flights, you are at greater risk of dehydration.
Traveling can make adhering to your meal plan tough. Sometimes you may not feel like eating or you may not be hungry. If you are in a foreign country, you may be eating unfamiliar foods. High-calorie supplements can be a great source of extra calories during these times if it's possible to bring them with you. Ask your CF care team for the right one for you.
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