What is PCD?

PCD is a rare genetic disorder that affects several systems in the body. It can lead to chronic infections of the lungs, nasal sinuses, and ears.
Children with PCD generally have a wet cough and/or a runny nose; however, this is rarely contagious to healthy children. For people with PCD, a cough is essential for moving mucus out of the airways and should be encouraged, especially after exercise. Tissues should be available for the children to cough their phlegm into and blow their nose with throughout the school day.
Intermittent hearing loss is common in PCD, particularly during a cold. This is because cilia are partly responsible for clearing the ears of mucus. If the cilia do not work the build-up of fluid can result in recurrent glue ear. Whilst grommets are often used in the treatment of children with recurrent glue ear, in those with PCD they are found to be less beneficial. The treatment of this is therefore to monitor hearing regularly and support this with hearing aids if required. Whilst the PCD Service will regularly monitor the children’s hearing, if you have any concerns with their hearing or notice changes consistent with hearing problems such as unexplained disruptive behaviour, delayed speech development, lip-reading, talking loudly, failing to respond when called etc., please let their parents know.
Around 50% of children with PCD have a mirror image arrangement of their internal organs i.e., their organs are on the opposite side of the body to where they are normally. This does not affect the children on a day-to-day basis but might be important information to share in the event of an emergency.
Trapped mucus is a source for repeated infections and, for some children with PCD, this can result in multiple absences from school. Sometimes children are admitted into hospital for two weeks (or more) for intravenous antibiotics and intensive physiotherapy. During this time, the hospital school will be in contact with you to help ensure the child does not miss out on too much learning. Exams can be facilitated in hospital if necessary. We expect most children with PCD to have attendance levels within normal limits (>92%). As medical appointments do not count in unauthorised attendance figures, please ensure that the child is not excluded from any attendance award schemes if they only miss school for their hospital appointments.
Exercise, alongside physiotherapy, is key in helping improve mucus clearance. Children with PCD should be able to keep up with their peers and should be actively involved in physical activities and sports days. Occasionally, individual children may have asthma, in addition to PCD, and therefore they might need to use inhalers prior to exercise. This should not stop them participating in any sport. A small proportion of children with PCD also have associated heart problems and this may impact on their exercise ability. If this is the case the child’s parents will be aware of any limitations. Please remember to provide tissues so the child can clear their chest and nose during and after exercise.

Some of the ways schools can help the children with PCD is to:

  • Seat the child at the front of the class facing the teacher to prevent any missed learning associated with hearing loss.
  • Encourage the child to clear their nose before doing any class-based cooking/tasting sessions. This is important both for good food hygiene and as their sense of taste can be impaired due to a blocked nose.
  • Provide tissues (and a place to clear their nose and chest in private if needed) as necessary. Gently prompt the child to clear their nose regularly as they may not be aware their nose is running. It is helpful for the child to be near a bin to dispose of tissues.
  • Liaise with the hospital school during admissions to help the child keep up with their schoolwork.
  • Ensure that children can drink freely to make their mucus/phlegm less thick and easier to clear. This is important especially during hot days.
  • Children with PCD should be permitted to go to the toilet as and when necessary. Sometimes a bit of privacy is helpful if children need to clear mucus/phlegm from their chest. This should be actively always encouraged, as it is crucial to maintaining good lung health.