Sheffield Charity Calls For More Understanding Of Rare Disease
A Sheffield charity is calling for more awareness and understanding of the rare heart and lung condition pulmonary hypertension, after its research revealed it has a severe impact on quality of life.
According to a survey by the Pulmonary Hypertension Association (PHA UK), based in Chapeltown, 60 per cent of patients think the serious condition has a 'major impact' on their overall quality of life.
The Living with PH Survey revealed that emotional wellbeing, relationships with family and friends and finances are all affected by the life-limiting disease, which causes high blood pressure in the blood vessels connecting the heart and lungs. PH is very rare, affecting just 7,000 out of 64 million people in the UK.
Chris Johnson, from Wombwell in Barnsley, was diagnosed 13 years ago and is treated at the Sheffield Pulmonary Vascular Disease Unit at the Royal Hallamshire Hospital - one of just seven specialist treatment centres in the UK.
Chris, 54, said: "Having PH is frustrating, because I can't do things I used to do. For example, I used to like to go to the gym a lot, but now I can't even walk up inclines. I've lost contact with a lot of people I knew. I know it's not the same for everybody but when you get poorly, some people seem to move out of the way.
"My family still don't understand my illness and that does make things hard. I don't look ill, and that doesn't help in terms of understanding. You can't explain it to anyone and it's frustrating trying to get through to people."
The Living with PH Survey also revealed that 48 per cent of patients waited over a year after first experiencing symptoms before being diagnosed, and 40 per cent had to see four or more doctors.
Chris waited two years to be told he had PH, after his symptoms of breathlessness were dismissed as asthma. He added: "I kept going to my GP and they kept giving me asthma inhalers. Every colour you can get, I had. It was getting so bad that I was having to go upstairs on my hands and knees, and on my behind coming back down.
"My wife used to find me sitting on the floor with tears running down my face because I couldn't do anything. It was upsetting and frustrating because it felt like every time I went somewhere I was told there was nothing wrong - and there clearly was."
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 PHA UK is using the results of its survey to campaign for public policy changes that will improve quality of life for people with PH. Its advocacy programme, PHocus2021, is aiming to reduce the time to diagnosis, ensure access to treatments and reduce financial hardship incurred by living with the disease.
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."
Symptoms of PH typically involve breathlessness, fatigue, black-outs and swelling around the ankles, arms and stomach. PH affects the ability to carry out basic tasks and get around.
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.
Sheffield Charity Calls For More Understanding Of Rare Disease , 18th September 2017, 10:09 AM