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.
A Teacher's Guide to CF
Parents of children with cystic fibrosis may be anxious about whether a school or day care can accommodate their child's special needs. Students with CF may worry about being different from their peers. As a teacher, you can provide reassurance to both parents and students by working with them and CF health care professionals to maximize your student's overall learning experience, while helping to maintain his or her health.
CF is a life-threatening genetic disease. It is not contagious and does not affect cognitive ability.
In people with CF, a defective gene causes the body to produce unusually thick, sticky mucus that can clog the lungs, pancreas, and other organs. This buildup can lead to severe respiratory and digestive problems that may warrant special accommodations in a school setting.
CF affects each individual differently. Some people with CF are in good general health, while others are severely limited by the disease and are unable to attend school regularly. It is important that you meet with your student's parents and CF health care providers to determine the best way to support your student's unique needs.
Learn more about cystic fibrosis.
In people with CF, mucus can obstruct the digestive system and prevent proper absorption of nutrients, which can slow growth.
To boost growth and nutrition, children with CF follow a special diet, which includes pancreatic enzymes, vitamins and high-calorie, high-fat foods.
Meet with your student and his or her parents about ways to help your student maintain a healthy diet. Accommodations may include allowing the child with CF more time to eat during lunch, to snack throughout the school day, and to take nutritional supplements and enzymes with each snack and meal to increase calories.
Although enzymes help with digestion, people with CF may still experience abdominal pain, foul-smelling gas, and/or diarrhea. This is why it is important to:
Learn more about CF and nutrition.
People with CF tend to cough a lot to clear mucus from their lungs.
In a classroom, a student with CF may feel self-conscious about coughing in front of others. You can help your student feel more comfortable by:
Although some people with CF have difficulty breathing and may tire easily, regular exercise is generally encouraged because it helps loosen the mucus that clogs the lungs and strengthen the muscles used to breathe. Exercise also promotes healthy social interaction with peers.
To help determine the appropriate level of physical activity for your student:
Dehydration is a real concern for people with CF who are active because they can lose more salt when they sweat than those who do not have CF. During exercise, encourage your student to:
The thick mucus that builds up in the lungs of people with CF allows germs to thrive and can lead to serious lung infections. As a result, people with CF are more vulnerable to getting sick by catching germs from others who are sick, and particularly from others with CF.
The Cystic Fibrosis Foundation's Infection Prevention and Control Guidelines help people with CF, their families, and caregivers reduce the spread of germs in everyday life, including school settings, and provide the following recommendations:
While lung infections in people with CF pose no danger to the public, they do pose a significant danger to others with CF. If there is more than one person with CF at your school (unless they are siblings from the same household), it is essential that they keep a safe distance from each other. People with CF should maintain a 6-foot distance from each other, and they should not sit near each other in class or on a school bus and never share water bottles or other personal items.
Watch the webcast, "Germs and CF at School."
Learn more about CF, germs, and staying healthy.
Although most people with CF do not have a visible disability, they may require special accommodations for frequent absences or medical treatments. Students and their families may want to outline these accommodations in what is known as an Individualized Education Program (IEP), or 504 Plan.
These plans protect the rights of people with CF to access free and appropriate education in public school settings. As a teacher, you play an important role by providing input and implementing these plans with your student, their family, and your colleagues to ensure your student's specific needs are met.
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