Children regardless of whether they have P.C.D. are prone to glue ear which results in a variable hearing loss

The main problems that people with primary ciliary dyskinesia face are repeated chest infections. This is the result of absent, reduced or poorly coordinated movement of the cilia (or hairs) that line the airway tracts. These usually remove mucus in a constant stream to the mouth where it is then swallowed. Without their action the mucus which is constantly produced is not removed from the lung. So it begins to pool and forms a nice, moist, warm and even nutritious environment for the bugs to live and grow in. There are a number of things you can do to improve your lung function:-

  1. PHYSIOTHERAPY: As you know this forms the mainstay of treatment. Regular physiotherapy clears the airway of mucus preventing collections of mucus forming. With the onset of an infection which results in increased amounts of often stickier mucus being produced physiotherapy drains these affected areas.
  2. EXERCISE: In the majority of people with or without PCD, exercise causes an increase in airway diameter and will open airways that may be narrow or closed at rest. Exercise can also strengthen the chest wall respiratory muscles. The wider airways and stronger respiratory muscles will help getting rid of more of the mucus. Children with PCD should be able to keep up with their peers. Because of previous lung problems individual children may have hyper responsive airways (asthma) and need more medication prior to exercise. However this shouldn’t have to stop them doing any sport.
  3. BREATHING: This is the basis to the physiotherapy you practice in the older kids who are able to understand what is wanted. However deep breathing is always valuable for the relaxation and airway opening effect that is achieved. Activities such as singing (and shouting!), playing a wind instrument and sport all naturally encourage deep breathing.
  4. DO NOT SMOKE!: Smoke is a strong irritant. Inhaling smoke increases mucus production (just what you don’t want), causes inflammation of the wall of the airways, and can produce asthma. Smoke also stays in the air inside a room for hours, days and weeks. Children should not smoke (teenagers are the only group in whom the incidence of smoking is increasing). Parents also should set an example in this instance – difficult though it can be to give up.

These are the most important environmental issues. Others will be learned on an individual basis. For example a child with PCD and hyper responsive airways may also be allergic to domestic pets, or pollens which can irritate the airway and increase mucus production. Certain chemicals can do the same such as in aerosol sprays or paint.

Keeping ahead of COVID-19

Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.