MEDIA EXPERIENCE: Flying the flag for PH in the news
Victoria Sant told her local Sussex lifestyle magazine, etc, that five months after her PH diagnosis, she is determined to keep positive.
In the article, titled ‘Living life to the full’, Victoria said: “People always say life is short but very few do anything with it. I don’t know what my prognosis is and I try not to think about it too much as I don’t want to waste my time being miserable. I do have down days but I try and keep positive and there are so many things I want to be able to do as I’m only 31.”
Victoria shared her journey to diagnosis, which involved her believing that her breathlessness could be down to lung cancer. But following tests and ECGs at the Royal Brompton Hospital, she was diagnosed with pulmonary hypertension and connective tissue disease – which consultants said linked PH with her existing condition of autoimmune hepatitis.
She said: “When the consultant first told me it was a lot to take in. I had so many family members asking me questions that I just couldn’t answer so I told them about the PHA UK website as there was so much information out there.”
The article in etc. also included information about the signs and symptoms of PH, who it affects, and where to find support.
Victoria’s story was
also shared in the magazine’s sister publication, the Crawley Observer, and on
Emphasis: “Seeing myself in the ‘etc’ article and unexpectedly in my local
newspaper, made me feel proud. It’s good for people to read, especially friends
and family, as they can understand what I’m going through. As always with these
things I would have loved more detail, but I know I can’t have a book!
The journalist was very easy to talk to, she made me feel at ease and told me how interesting she found this story.
I know a lot of people struggle to talk about PH but for me talking is like therapy and putting it out there into the world is my way of coping – and if I can help someone then all the better!”