“As well as being rare, PH is also invisible – and that’s what I find tough”
Music therapist Tess Jewson is 27 and lives in Chelmsford in Essex. She has been living with pulmonary hypertension for ten years.
“I was originally told my symptoms of breathlessness were down to asthma and I tried every inhaler going. No-one realised it was a symptom of pulmonary hypertension. It wasn’t until I was 17, at college, when I suffered really bad chest pains, collapsed and was taken to hospital. Tests showed a hole in my heart that hadn’t closed up had led to pulmonary hypertension.
I got diagnosed in February 2008. My 18th birthday was in the November and I was told to bring the celebrations forward, because they didn’t know what my prognosis was, only that I was really, really ill.
I didn’t have a clue what pulmonary hypertension was, I was totally lost. Would I die? To be honest, I don’t think I grieved. I just thought, I’ve got a heart condition, but I’m going to get on with my life.
Not many people know what pulmonary hypertension is. And when you do explain it to them, they think it’s just high blood pressure.
As well as it being rare, it’s also invisible, and that’s what I find tough. I have a disability badge for my car, and I get a lot of looks because when I go out I slap on the make-up so I can look my best, and not look ill.
There are times when I do think about what’s ahead of me and I feel sad. I know things will get bad, but until that time comes, I’m going to continue living the life that I’m leading and think of the now, not the future.”