Awareness week aims to put rare disease in the spotlight
A rare disease that leaves people struggling to breathe will go under the spotlight during a dedicated awareness week in November.
‘PH Awareness Week 2017’ takes place from November 20th – 26th and will encourage people to find out more about pulmonary hypertension (PH), a serious condition that causes high blood pressure in the blood vessels connecting the heart and lungs.
The campaign has been organised by the Pulmonary Hypertension Association UK (PHA UK) following the success of its inaugural awareness week last year.
PH is very rare, affecting just 7,000 people in the UK, and the disease makes it harder for people to carry out basic tasks and get around.
The theme of this year’s campaign is breathlessness, in recognition of it being one of the main symptoms of PH – resulting in the condition often being mistaken for asthma. Many people also experience fatigue, black-outs and swelling around the ankles, arms and stomach. The disease can put increasing strain on the heart and lead to irreversible damage and heart failure.
Julie Royle, 58, lives in Manchester and was diagnosed with PH on her birthday five years ago. She said: “Breathlessness has affected me psychologically in a massive way. It’s all encompassing. Every minute and every second of every day, I’m thinking about being breathless.
“I used to focus my life on my family and my work, but now my life is focused on my breathing. I’m consciously anxious because of it. It takes over. I’m not as independent as I used to be. I feel very vulnerable, and unsafe in my own body, because I don’t really know what’s going to happen next.”
Research by the PHA UK, revealed earlier this year, showed that 60 per cent of patients feel PH has a ‘major impact’ on their quality of life – and 87 per cent said it has impacted their mental and emotional wellbeing.
Iain Armstrong, chair of the PHA UK, said: “Pulmonary hypertension has a massive effect on people’s lives but so few people know what it is. As a rare disease, it’s not talked about enough and our awareness week aims to change that. We want people to understand not only what PH is, but also what it’s like to live with such a serious, little-known condition. It’s time to bring pulmonary hypertension out of the shadows.”
People can be born with PH or develop it at any time and it can affect anyone, regardless of age or ethnic background. It affects more women than men.
There is no cure for PH, but a range of highly advanced treatments developed over the last 16 years has seen quality of life improve and life expectancy double to around six to seven years on average, with many living longer. A few people with PH undergo heart and lung transplants.
There are nine NHS specialist PH centres in the UK, based within hospitals in Sheffield, London, Glasgow, Cambridge and Newcastle.
Julie, who is treated at the Royal Hallamshire Hospital in Sheffield, said: “My treatment is an integral part of me being here today. The specialist centres are vital to us feeling safe as patients as they are the only places where we know we will get the right treatment, quickly, which sometimes is the difference between life and death for us.
“Despite the fact that I do have PH, and I do have breathlessness, I wake up every morning knowing my family and friends are around me. Some days I’m well enough to play with my grandson; some days I’m not. But along with my medication, he helps keep me going. I really didn’t think, at the stage I was diagnosed, that I would still be here five years later.”
Notes to Editor
The social media hashtags #PHWeek17 and #BreathlessNotVoiceless are being used to promote PH Awareness Week 2017
About the Pulmonary Hypertension Association UK
The Pulmonary Hypertension Association UK (PHA UK) is the only charity in the UK dedicated to supporting the PH community made up of patients, their family and carers and NHS professionals too. It provides information, support and advice; and funds thousands of pounds worth of medical research and health education initiatives to promote better awareness, diagnosis and treatment of the disease.
About the Living with PH survey
In 2016, 563 people affected by pulmonary hypertension responded to the PHA UK’s Living with PH survey, which was designed to measure the impact of the condition.
Key findings included: 60 per cent said PH has a ‘major impact’ on their quality of life; 79 per cent said it affects their relationships; 90 per cent said it impacts their concerns about life expectancy.
PHA UK is a registered charity no: 1120756