PH affects different people in different ways, and some, like Derek Coles, are able to live near-normal lives with the disease. The 78-year-old from Carrickfergus in Northern Ireland shared his story to show that every experience matters.

“I had been breathless for some time, but it came to a head about ten years ago, when even simple tasks such as climbing the stairs became difficult. I was referred for tests in Belfast, and idiopathic pulmonary hypertension was confirmed.

Luckily, the medication started working for me from day one. A couple of years later my wife died, so I moved from Northern Ireland to England to be near my son. I was seen by a specialist PH centre in London, and was told that rather than idiopathic PH, I actually had chronic thromboembolic pulmonary hypertension (CTEPH).

It was somewhat of a relief to get the idiopathic tag off it and give it the right name. But it hasn’t changed anything as far as the way I live and the way I take my medication.

I just keep doing what I’m doing. I keep taking my tablets and motoring on, back now in Northern Ireland.

It’s always in the back of my mind that I’ve got limits which I didn’t think I had before, but while everything’s working, I’m happy. I do feel like one of the lucky ones. I know I was fortunate to get a fast diagnosis of PH, and the specialist care I receive is exceptional.

The medication I’m prescribed has reduced my symptoms sufficiently to allow me to live a near-normal life, and it’s not obvious to others that I have CTEPH. However, some others with this invisible disability are not so fortunate. 

PH is a serious health condition that only a small percentage of the population has to suffer, so raising awareness of it is important – and not just among the general public. More healthcare professionals need to understand it too.”