Understanding the condition
Children with Cystic Fibrosis are born with the condition, it is not a condition that you can develop later in life. Cystic Fibrosis is caused by two faulty or “mutated” CF genes. The faulty genes should control the movement of salt and water in and out of cells. Children with the faulty gene that causes Cystic Fibrosis experience a build-up of thick sticky mucus in their lungs, digestive system and other organs. This can cause a wide range of additional difficulties that affect a child’s entire body.
Cystic Fibrosis is an inherited condition and will occur if both parents have the faulty gene however parents may not be aware that they carry the faulty gene and in doing so, it does not guarantee that they will have a child with Cystic Fibrosis.
“One in 25 people carry the CF gene. For someone to be born with CF, both parents must carry the faulty gene. If both parents have the gene, there is a 25% chance the child will have CF. If both parents carry the gene there is also a 50% chance of the child being a gene carrier but not having CF and a 25% chance, they will not have the CF gene.”
The additional conditions experienced by children with CF are generally physical in nature such as poor lung function, frequent and persistent lung infections and the inability to effectively digest food, particularly fats as well as additional complications such as CF-related diabetes, bone disease and infertility. However due to the nature of the condition it may cause the child to have above average absence from school to attend appointments and treatment for lung infections which can lead to the child experiencing low self-esteem, reduced self-confidence and in cases mental health difficulties such as anxiety, depression and self-harm.
Challenges faced by students
As a teacher, it is important to be aware that certain topics in school may cause distress to children and young people with CF. It is important to meet with the child/ young person and their family/ carers ahead of a lesson to discuss what you intend to cover and check with the family/ carers that the child is aware of the impact CF has on their life for example if you are covering life expectancy, does the child know that their life is limited? When covering fertility in Biology, does the child know that infertility is a major difficulty for individuals with CF?
A child/ young person with CF may experience loose stools, a frequent need to go to the toilet and stomach aches. Supporting them to have access to a toilet when needed with sensitivity and without raising attention to other students will enable them not to feel “different” to other children or feel worried about leaving class to go to the toilet.
In school, with “difference” and lack of understanding spurring some children to bully, it is important to be observant and support the child and their family/ carers to talk with you about whether thy want to share the condition with the class and if so how.
To find out more about how to support a student in your class, please visit: www.cysticfibrosis.org.uk
Cystic Fibrosis UK have a range of resources from Me and CF Fact Sheet for students to use, a template health plan to be used in schools, short video clips and information on how to support other students in your class to understand the condition.