Patient perspective
Fiona Copeland: the patient's mother
Gregor had symptoms of primary ciliary dyskinesia (PCD) from birth. He was born with a cough and a cold and ended up being admitted into a special care unit after 24 hours with pneumonia. It wasn't until he was 4 years old that he received the diagnosis of PCD.
Gregor was generally unwell when he was little. He received a lot of treatment for what his doctors thought was asthma including several courses of steroids. This treatment caused his bones to be weak and when he had an injury playing sport it took a long time to heal. If he had received the correct diagnosis sooner we might have avoided the overuse of steroid treatment. He also experienced hearing issues when he was younger because of PCD, which meant he was very late in speaking and had to see a speech therapist.
We have two children with PCD, which has been hard work. I have had to give up working full time to look after them. Now Gregor is 16 years old he manages his condition himself a lot more, but we still have to take him to hospital appointments, get sputum samples delivered to the hospital for testing when he isn't well and arrange to get his medication from the GP/pharmacist. We have also been trained to administer intravenous antibiotics at home when they are needed.
We have tried not to wrap the boys in cotton wool and encourage them to lead active lives and eat healthy diets. Missing a lot of school has been difficult for Gregor and he had big gaps in his primary education.
We can contact respiratory nurse specialists at our local and specialist hospital at any time if we need an urgent appointment. You can live a “normal life” …