Kevin McAllister from Newcastle was diagnosed with PH at the age of three. Now he’s started to notice his body’s limitations but won’t be defeated.

How does PH affect your daily tasks?

“Nowadays, I get out of breath putting socks on and climbing stairs. It’s frustrating but I’m still independent and I will continue to push my body. When I was younger, I had ambition to become an artist and after almost 20 years, I started painting again. It helps me switch off from the world and my condition.

I always suffered with shortness of breath but since my late thirties and early forties, I have seen a massive change in my breathing and the ability to do daily tasks. Day-to-day activities such as shopping for food or browsing retail stores are nearly impossible unless I am just going out for a few items.”

How does PH affect your relationships with family and friends?

“My PH has had a huge impact on my social life. My friends meet on a regular basis in Newcastle city centre but I’m restricted as I cannot walk the distances anymore, so I often meet them at home.

My eldest child fusses over me a lot and encourages me to rest. She has a better understanding of my condition as she used me as case study during her media degree for a project entitled ‘blind to disability’. It focused on how people view disabilities and their reaction to people with PH who appear healthy on the outside.

My wife is the one affected most by my condition. She’s a businesswoman, a mother and a carer for me – and I know it all takes its toll. If I get the flu or seem breathless for consecutive days, her brain goes into prevention mode and she restricts my normal daily activities. Every day we spend together as a family, even if it’s just for a few hours, is a day I feel blessed.”

How do you live life to the fullest?

“I remain as active as possible and enjoy life with my family. Having lived with PH for most of my life I know my limits and can recognise any warning signs.

My advice to anyone reading this is to keep fighting. There are no re-runs and life is a one time only gig. We are all dying from the moment we take our first breath – it’s what you do in-between that determines if you’re celebrated long after your last breath.”