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Educational video: Primary Ciliary Dyskinesia—How to Treat it and Live with it. Primary Ciliary Dyskinesia Family Support Group.
The last time my Godsons came to stay, their father brought a video player along. He believed (wrongly) that I would not cope with the boys for the weekend without video diversion. Videos have become the mainstay of family life and are potentially a great educational resource. The Primary Ciliary Dyskinesia (PCD) Family Support Group have recently produced a video aimed primarily at families with PCD sufferers.
The video aims to promote better understanding of the disease, its management, and most importantly, how to live with it. In this final objective it succeeds best. The individuals with PCD on the video give a clear cut, positive, and robust description of how they deal with their disorder, and this should be enormously helpful to newly diagnosed families. Another highlight is the beautiful video pictures of ciliary motion (produced I suspect by Chris O’Callaghan’s group).
I was slightly disappointed that the narrator did not use more simple language. This was a missed educational opportunity, although, in practical terms, it could be overcome by a member of the team going through the video with some families.
I have two other minor quibbles. A throwaway line suggested that children aged 2–3 years could learn the active cycle of breathing technique. This is incorrect although they can certainly be taught how to huff and to blow. It is unfortunate that alternative remedies such as reflexology are given some credence towards the end of the video. Patients with PCD have enough to put up with without being exposed to cranks and charlatans. However, grind your teeth and put up with it, for on the whole your patients and your staff will be better off for having seen this video.