Sheffield charity's campaign to help people with Pulmonary Hypertension

Research by the Chapeltown-based Pulmonary Hypertension Association showed 60 per cent of patients think the condition has a ‘major impact’ on their quality of life.

Emotional wellbeing, relationships with family and friends, and finances are all affected by the disease that causes high blood pressure in the blood vessels connecting heart and lungs. But PH is rare, affecting 7,000 of 64 million people in the UK.

Chris Johnson, from Wombwell, was diagnosed 13 years ago and is treated at the Sheffield Pulmonary Vascular Disease Unit at the Royal Hallamshire Hospital - one of seven UK specialist treatment centres.

Chris, 54, said: “I used to like to go to the gym, but now I can’t even walk up inclines. I’ve lost contact with a lot of people. My family still don’t understand my illness and that does make things hard. I don’t look ill.”

The Living with PH Survey also revealed 48 per cent of patients waited over a year after experiencing symptoms before being diagnosed, and 40 per cent had to see four doctors.

Chris waited two years to be told he had PH, after his symptoms of breathlessness were dismissed as asthma. He said: “My wife used to find me sitting on the floor with tears running down my face because I couldn’t do anything.”

Concerns about life expectancy have the biggest impact. Almost two thirds of sufferers said financial worries also had impact. The PHA UK is using the survey results to campaign for public policy changes to improve matters.