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.
All too often, we begin an exercise program but quickly quit. Change doesn't happen all at once, nor does it happen at the same rate for different people. Starting at the right pace is important, and knowing your fitness level, or state of readiness, is key to finding the exercise plan that's right for you.
So, how do you develop a fitness plan you can enjoy and stick with? Think about your interests and abilities, then work with
your cystic fibrosis care team to plan a fitness program around what you like to do and what fits your lifestyle.
Make it sustainable. These three key steps will help you develop a fitness plan you'll keep doing:
Not all CF care teams include a physical therapist. If yours does, then he or she is trained to design an exercise or physical activity program to fit into your daily routine. If your CF team does not include a physical therapist, ask them to help you
Your physical therapist will work with you to design an exercise or fitness program that is based on your age, health status, and include sports or other physical activities that you enjoy doing to help you maintain lung function and a generally good
physical fitness level.
You can also work with your CF physical therapist on ways to maintain a good posture and build or regain muscle strength and endurance through various techniques to improve your mobility and lung function. They can also help you address embarrassing issues
urinary incontinence (UI). In some CF care centers, the physical therapist
will also help you learn
airway clearance techniques (ACTs), which should be done in addition to your fitness program.
At a glance, your CF physical therapist:
Watch the webcast below to learn more about your respiratory and physical therapists, including:
Adults with existing medical conditions like CF should talk to their health care provider before starting an exercise program. You may be asked to do some tests first, depending on your level of activity and health. A regular exercise test can help you
find out the strength of your lungs, heart, and muscles.
A physical therapist or other member of your care team can help you figure out your fitness level by testing your current physical fitness. Usually, it's smart to measure both aerobic fitness (cardiovascular) and muscular fitness (muscular strength).
Fitness testing may be done using simple tests like walking certain distances and doing calisthenics (a form of rhythmic exercise that can be done without equipment). Testing may be done in a laboratory with special exercise equipment. These tests help:
Goal setting is one of the keys to success in changing your habits. The clearer and more realistic your goals, the more likely you are to achieve them. There are two major types of goals:
Your overall goal, or product goal, may be to move from an inactive lifestyle to doing regular physical activities at levels recommended for health. To reach this long-term goal, your care team may set a series of process goals.
These may include beginning with two 10-minute brisk walks on five days per week for two weeks; then doing three 10-minute walks, five days per week in the next two weeks; and moving on to a 30-minute walk, three days per week, plus a 10-minute jog, one
day per week during the next two weeks, and so on.
The point is, rather than simply saying, "I plan on exercising more every two weeks," you set a specific goal of exercises with specified intensities, duration, and frequency.
You can also plan for a realistic time schedule, such as 30 minutes every Monday, Wednesday, and Friday, that can be monitored and modified as needed. Even if you don't fully reach your overall process goal, the exercise program can still result in meaningful
changes in your health.
A critical part of the exercise program is keeping records of your daily exercise. This will help you know if you are meeting both process and product goals. Keeping records will be helpful to measure your progress.
One approach is to keep an exercise diary in a notebook or on the computer. Step counters, or pedometers, are easy-to-use monitoring devices. They are usually portable and can be worn on your belt to record the number of steps that you take throughout
the day. On many devices, the step count is displayed on a digital screen so you always have feedback on how much you're walking. Another option is to add a fitness app to your smartphone.
Your aerobic exercise program can include a target number of daily steps, often set at 10,000 steps per day, which may help motivate you to reach your exercise goals. If you are currently inactive, set your steps per day goal lower and gradually increase
it to 10,000 (or higher) as you become more active.
The physical therapist, exercise physiologist, or physician on your care team can help you determine the right energy expenditure or “exercise dose” for your individual exercise program.
Your care team can help you develop an exercise program tailored for your level of fitness, your exercise and health goals, and the equipment available. To reach your desired exercise dose, the type, intensity, duration, and frequency of exercise will
Resistance exercise, consists of the type, number of repetitions and sets, and intensity of muscle-strengthening activities.
As part of your cooling-down period after exercise, think about doing some gentle stretches. Not only will these stretches help you wind down after exercise, they may improve your flexibility.
This slideshow from the Mayo Clinic explores some of the more important stretches to include in
It is also important to include stretches for your upper body. Good flexibility in your shoulders and trunk will help to improve your posture, prevent pain, and make it easier to breathe deeply.
Yoga is a great way to stretch and increase flexibility as well as:
You can do yoga at a studio or at home with a video. Contact
firstname.lastname@example.org to get your own copy of the DVD, “Yoga for CF.”
Regular exercise is a good health habit. But you should talk with your doctor or physical therapist about any risks that may result.
The most common risk during exercise is musculoskeletal injuries, such as sprained ligaments, strained muscles, and overuse injuries. Injury risk is higher in those with a history of previous musculoskeletal injury and is associated with exercise intensity.
The risk of exercise-related cardiovascular complications (for example, heart attack) is quite low. Cardiac events during exercise are most likely to occur in people with existing cardiovascular disease and in those who are inactive and out of shape.
The risks of exercise can be reduced through sensible habits that include warming up before and cooling down after exercise. Slowly increasing your exercise amount and the intensity toward your goal is also recommended. You don't want to start walking
three miles (your goal) when you haven't even walked four blocks regularly.
Pay attention to sensations or responses during exercise that may be a sign of injury. Talk to your doctor or physical therapist before exercising if you have:
Modify your exercise program when you have:
Dehydration is a real concern for active people living with CF because they can lose more salt (sodium and chloride) when they sweat than those who don't have CF.
This is especially important if you're playing sports or exercising outside when it is hot and humid.
Preventing dehydration is key. Start drinking more fluids before, during, and after exercising to help you maintain or replace electrolytes (chemical salts such as sodium, chloride, potassium, and bicarbonate that help your cells work). Many sports drinks
can be good sources of electrolytes and you may want to increase your salt intake by eating salty snacks. You should also try to avoid drinks with caffeine, which can increase fluid loss.
You can prevent becoming dehydrated by:
Repeating the physical fitness testing you did with your care team before starting your exercise program will give you important information on how exercise is helping your body. This information is useful for modifying the exercise prescription during
the program and for evaluating the overall success of the exercise program. It may help you and your health care provider decide whether to begin new CF therapies or modify your current therapies.
Get the most out of your exercise program by paying close attention to your diet. Eat a balanced diet that has enough calories to meet your energy needs.
Seek ways to engage with others as part of your exercise program. Join a hiking club, fundraising walks, and organized runs.
Reduce your inactive time -- sitting at the computer, playing video games, watching TV -- and replace that time with more active pursuits.
Take “active breaks” from your sitting: You should stand up and move for one to two minutes every 20 minutes. Set an alarm to remind you while at your desk or stand up during every commercial break while watching TV.
Remember, the severity of your lung disease and certain medications may change how your heart rate responds to exercise. You should always talk to your doctor or physical therapist to be sure you are monitoring your exercise intensity correctly.
Gym memberships, yoga classes, and sports teams can be expensive. If the cost of your or your child’s favorite activity is keeping you from being active, talk with your CF team to learn about grants and scholarships you may be eligible for.
If you are thinking of doing a competitive sport, keep these things in mind:
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