Patrick Long is 50 and he lives in New Malden, Surrey. He has been a PHA UK member since being diagnosed with idiopathic PH in 2020, and in late 2024 he discovered he also has multiple myeloma, a type of bone marrow cancer.
At the Royal Brompton Hospital in London. I knew nothing about PH before my diagnosis.
Hearing about upcoming treatments and medicines.
I am currently well managed and that means up until my cancer diagnosis I was able to compete (at a low level) in indoor bike races. Cycling means a lot me to and I still want to be able to do that as I get older. So, living well is being able to do that and also go on holiday with my wife.
I often hear about patients being happy that they can walk around the block or even take the dog for a walk. I respect that desire and the joy it must bring.
It’s not over for you. Don’t Google PH or look at life expectancy stats, as new treatments are coming along all the time and we have come so, so far in the last 20 years.
And finally, what makes you smile?
Still being able to exercise and ride my bike.
