So, I’m 19 and well; primary ciliary dyskinesia (PCD), that’s just the way it goes sometimes. Not the easiest of things to have to deal with, especially when trying to figure out who you are and cope with all the new bodily and social changes that everybody goes through.

While I may insist that PCD is hardly something to get wound up about, I cannot avoid admitting the intense effect it has had on my life—indeed for many years I unwittingly displayed a subconscious behavioural reaction to certain circumstances.

Although I can remember a time when physio was new, and I had to learn a new breathing pattern, life before seems hardly different. It was just the way things were.

Prior to diagnosis at the age of 5 years, I was certainly one persistent medical mystery. Born 12 weeks premature, numerous infections, and a hearing problem. Successions of grommets, and ear infections followed. Simultaneously I endured prominent tubes sticking out of my nose (“elephant tusks”) as holes were made in my sinuses, plus the removal of my tonsils and adenoids.

I was never under any illusion over why I was going to each appointment, or hospital; my parents made me aware, …