CYSTIC FIBROSIS

Cystic fibrosis (CF) is the UK's  most common life-threatening inherited disease.

SUPPORTING STUDENTS             MORE INFORMATION

Causes of cystic fibrosis

• Over two million people in the UK carry the faulty gene that causes cystic fibrosis (CF) - around 1 in 25 of the population.
• If two carriers have a child, the baby has a 1 in 4 chance of having cystic fibrosis.

Symptoms of cystic fibrosis

• Cystic fibrosis causes the body to produce thick secretions that particularly affect the lungs and digestive tract.
• It is common for people with cystic fibrosis to encounter some difficulties with their lungs.
• Cystic fibrosis affects the pancreas, which makes it difficult for people with CF to digest food leading to malnutrition resulting in poor growth, physical weakness and delayed puberty.
• There is medication that can compensate for the failure of the pancreas.

Treatments for cystic fibrosis

Currently there is no cure for CF. It is a multi-system disease requiring a variety of treatments to ensure effective management.

• Physiotherapy - to help reduce and get rid of infection.
• Exercise - to improve health in general and to reduce use of medication.
• Medication - inhaled and intravenous drugs taken to clear mucus and fight infections.
• Nutrition - enzyme tablets to help digest food and dietetic information.

Policy on segregation

To avoid the risk of cross-infection, it is highly recommended that people with cystic fibrosis do not come into close contact with others with cystic fibrosis.

Supporting students with cystic fibrosis

• The SENCO in consultation with the student, parents/carers should draw up an agreed healthcare plan.
• Two students with CF should not be in the same class due to cross infection risk.
• Learn about the treatment regime for CF. Before arriving at school, a young person or child may have undergone up to an hour and a half of treatments.
• It is likely there will be frequent hospital appointments and possibly admissions. It’s important to liaise with the hospital teachers, particularly around exam time.
• Discuss with the student and parents/carers arrangements for PE. This will be informed by their medical treatment plan.

Medical needs

• It may be necessary for the young person to carry out exercises at school to help clear their lungs. Provide a clean and safe space for this e.g. the medical room.
• CF affects digestion, medication called Creon will need to be taken with meals. This will need to be stored safely. The student may wish to take this in a private place and not in the dining hall.
• Inhalers may be needed. Follow school policy on storage and access to inhalers.

Adjustments

• Breathlessness is a symptom of CF, this can be a challenge in a large secondary school. Talk to the young person about what may help them, e.g. a friend to carry their bag, leaving class a few minutes early.
• Where possible look at room movements for the class and where possible limit the distance required between lesson moves.
• Provide a set of text books for use at home so that the student does not have to carry them in and out of school. They are also available for use when they are unable to attend school.
• Don’t give out homework right at the end of the lesson if the student has permission to leave early.

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