Cystic fibrosis in school curriculums

Schools across the UK often use outdated or incorrect information when teaching their students about cystic fibrosis. This is because treatments for CF are getting better all the time and the curriculum doesn’t always keep up. My school was an example of this until I took action and had the content changed.

If the information is not correctly taught, it will lead to issues in knowledge about a sibling or friend of a child or teenager, and could cause them to be treated differently.

A prime example of this is airway clearance treatments. In my school and many other schools it is taught that the main airway clearance method for all people with CF is being patted on the chest and back (percussion). But in reality, there are many other forms of physio including PEP masks, the Acapella® and nebulisers.

I have also looked at my school’s slideshow for these lessons and a main part of the misinformation is the effect and the results of enzyme tablets like Creon®.

According to my school’s lessons, enzyme tablets help convert carbohydrates into energy, when in reality, most enzyme tablets contain lipase and protease, which help break down fats and proteins. Insulin is a hormone that helps drives sugars from the blood into the cells of the body. The insulin is not taken in tablet form but is given through injections or pumps if a CF patient develops CF diabetes.

When people I know did lessons on cystic fibrosis they came out to me in tears, saying that the teachers had told them that the average life expectancy for people with cystic fibrosis was 32 years. However, thanks to new medications this is increasing all the time – some people with CF live ‘til they are over 80!

They were also not taught about different variants (mutations) of CF and were taught it’s all the same. They didn’t go over how each variant can affect people with CF differently, so my friends thought everything that was said applied to me and every other person with CF. There are over 2,000 different cystic fibrosis genetic variants, and they are definitely not all the same.

Need help supporting a student with CF in your class? Creating a lesson plan on CF and want to find out more about the condition? Check out our resources for teachers.

Through our annual schools campaign, we also provide information and guidance for teachers on how to support children with CF in their schools.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,900 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.