PRESS RELEASE: Research reveals impact of rare heart and lung disease

People diagnosed with the rare heart and lung disease pulmonary hypertension experience a significant reduction in their quality of life, research has found.

In a survey conducted by national charity the Pulmonary Hypertension Association (PHA UK), sixty per cent of respondents said the serious condition has a ‘major impact’ on their overall quality of life.

The results of the Living with Pulmonary Hypertension survey, published today, show that emotional and mental wellbeing, and relationships with family and friends, are severely affected by the condition.

Pulmonary hypertension (PH) is a life-limiting disease that causes high blood pressure in the blood vessels connecting the heart and lungs. PH is very rare, with just 7,000 out of 64 million people in the UK living with a diagnosis.

Almost 600 patients responded to the Living with Pulmonary Hypertension survey, which reveals that concerns about life expectancy have the biggest impact on quality of life – with over 50 per cent reporting a ‘major impact’. Almost two thirds (63 per cent) said that financial worries had an impact on their lives.

The survey, which looked at all aspects of life with PH, also discovered that almost half of patients had to wait over a year after first experiencing symptoms before being diagnosed. 40 per cent had to see four or more doctors.

David Stott from Preston was diagnosed with pulmonary hypertension at the age of 36, just days after discovering his wife was pregnant with their fourth child.

He said: “Out of everything I’ve been through health-wise over the last four years, the memory of being told I had pulmonary hypertension is still the thing that haunts me. I know everyone dies eventually, but it’s very rare that you’re given a sell-by date.

“If anything, it’s the mental strain that I have suffered from more than the physical symptoms. But my children help me manage my condition by making me smile more than anything or anyone can, even when I don’t feel able to.”

Essex-based Tess Jewson, 27, who has lived with pulmonary hypertension for ten years, said: “I was originally told my symptoms of breathlessness were down to asthma and I tried every inhaler going. 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.”

PHA UK, the national charity for people affected by pulmonary hypertension, conducted the Living with Pulmonary Hypertension survey. It is using the results to campaign for public policy changes that will make life better for people with PH, via its advocacy programme, PHocus2021.

Iain Armstrong, chair of PHA UK, said: “Everyday life can be very challenging for people with pulmonary hypertension and the results of this survey show just how much the condition impacts upon quality of life for patients and their loved ones. This was vital research into what it means to have PH in the UK today and it provides concrete evidence which can be used to address the crucial need for targeted treatment and specialist care.”

Adult patients with PH are treated at seven specialist centres across the UK, and children with the disease are treated at Great Ormond Street Children’s Hospital in London.

Of those surveyed, 87 per cent said their PH treatment and management has improved their overall quality of life.

PHA UK is based in Sheffield and is the only charity in the UK dedicated to supporting the PH community made up of patients, their family and carers and NHS professionals.

The full results of the Living with PH survey can be accessed here

Watch patients talk about their lives with PH here 

 

Last medically reviewed: September, 2017 • September, 2020