A Teacher's Guide to Cystic Fibrosis

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 person 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 take pancreatic enzymes and vitamins. Some children with CF may follow a special diet.

Meet with your student and his or her parents about ways to help your student maintain a healthy diet. Examples of accommodations may include allowing the child with CF more time to eat during lunch, to snack throughout the school day, to carry a water bottle, and to take enzymes with each snack and meal.

Although enzymes help with digestion, people with CF may still experience abdominal pain, foul-smelling gas, or diarrhea. This is why it is important to:

• Give a student with CF frequent access to the bathroom.
• Not draw attention to the student if she or he passes gas frequently.
• Make the student feel comfortable about going to the bathroom when needed.

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: 

• Making it easy for the student to drink water at his or her desk or slip out of the classroom for water.
• Not drawing attention to the student who is coughing.
• Encouraging your student to keep a box of tissues to cough into and a trashcan to dispose of the tissue near their desk.
• Allowing the student to clean his or her hands with alcohol-based hand gel at their desk.

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:

• Talk to the student and parents about the activities they are comfortable with.
• Include the student in all games and activities in which he or she is interested.

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:

• Drink 6 to 12 ounces of fluid every 20 to 30 minutes.
• Consider sports drinks with added carbohydrates and salt.
• Avoid drinks with caffeine, which can increase fluid loss.

Learn more about CF and exercise.

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:

• Keep a minimum 6-foot distance (2 meters) from others with a cold, flu, or an infection in all settings, especially indoors.
• Encourage everyone to wash their hands by making soap and water or alcohol-based hand gel readily available in the classroom. Cleaning hands is particularly encouraged after using commonly shared items (such as pencil sharpeners or lab equipment).
• Avoid sharing personal items, such as straws or eating utensils.
• Encourage students to cover their cough or sneeze with a tissue. Throw the tissue away immediately, then wash or clean hands. If a tissue is not available, encourage students to cough or sneeze into their inner elbow.

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 at least a 6-foot distance from each other. They should not sit near each other in class or on a school bus. They should never share water bottles or other personal items.

Watch the video "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.

Living with cystic fibrosis demands complex care and treatment, which involves navigating a maze of health insurance coverage and significant out-of-pocket costs. These costs frequently force people and families affected by CF to make hard financial tradeoffs.

CF Foundation Compass is a personalized, one-on-one service that provides people living with cystic fibrosis and their families a partner in dealing with challenges related to life with CF, no matter they are in their CF journey. Compass case managers can help your students and their families with these complex challenges and more: 

• Understanding insurance basics
• Troubleshooting insurance coverage issues
• Seeking financial assistance for medical care and other living expenses
• Finding answers to legal questions related to work, school, disability/government benefits

Your students and their families can reach Compass at 844-COMPASS (1-844-266-7277) Monday through Thursday, 9 a.m. until 7 p.m. ET and Friday, 9 a.m. until 5 p.m. ET. They can also email at compass@cff.org or submit an online request form.

Insights from the CF Community

• How I Manage My Daughter’s CF During the School Year
• 6 Tips for A Successful School Year From a Counselor With CF
• How One School Nurse Is Preparing for Three Students With CF at the Same School
• Read other school-related blog posts