WORDS
OF WISDOM
e c n e i r e p x e y b s t r e p x e FROM THE
Medical professionals play a vital role in helping us managing our health conditions, but advice from those with lived experiences can make a big difference too. We asked seven PHA UK members what they would say to someone newly diagnosed with PH.
Julie Royle, diagnosed with PH in 2012
“Have an open dialogue with your specialist centre and your specialist nurses. The best thing you can do is talk about it. I didn’t, and when I look back, I realise I would overthink things but sometimes I wouldn’t talk about them. Half of the time it was because I didn’t want to accept what could be happening and what the future could be. I was trying to deny what was going to be the rest of my life. But talk to your family, and don’t hide anything.”
Kevin Rowland, Julie’s partner
“My advice for a partner or loved one is to learn as much as you can about what PH is, and not just what appears on Wikipedia. Learn from the professionals and know exactly what you are talking about. Then just take each day as it comes - and keep a sense of humour.”
WINTER 2021 emphasis 20
Tess Jewson, diagnosed with PH at the age of 17
“There is help and support out there. Live life to the full. Pulmonary hypertension will change your life, but as I always say, PH lives with me - not the other way around. If I could speak to myself 13 years ago, before I was about to receive my diagnosis, the message I would give myself is that it’s going to be okay.”
