Awareness week aims to get people talking about rare heart and lung disease

PRESS RELEASE: People living with the rare heart and lung disease pulmonary hypertension are being encouraged to get talking to help others understand the condition.

PH Awareness Week 2018 takes place from October 22 -29, aiming to put pulmonary hypertension (PH) under the spotlight. The theme of this year’s campaign, organised by the Pulmonary Hypertension Association (PHA UK), is ‘Let’s Talk PH’.

PH affects just 7000 people in the UK and causes high pressure in the blood vessels connecting the heart and lungs. Symptoms include severe breathlessness, fatigue, blackouts and swelling around the ankles, arms and stomach. Many of those living with the disease find it difficult to get around.

A recent survey by the PHA UK found 60 per cent of patients feel PH has had a ‘major impact’ on their quality of life and almost 90 per cent said it has impacted their mental and emotional wellbeing.

The life-shortening disease can put increasing strain on the heart and lead to irreversible damage and heart failure. There is no cure.

To encourage understanding of the disease, the PHA UK is calling on people affected by the condition to talk to family, friends and colleagues during PH Awareness Week.

Iain Armstrong, chair of the Sheffield-based charity, said: “Many hear the word ‘hypertension’ and immediately assume it is high blood pressure, but PH is an extremely serious, devastating condition that has a huge impact on people’s lives. You can’t tell someone has PH just by looking at them, and our members tell us they are often frustrated by people not understanding how ill they are – which is why talking about the disease is so important.”

Pam Ellis

Pam Ellis, 62, lives in Sheffield and was diagnosed with pulmonary hypertension three years ago. She said: “Having PH affects me in all sorts of ways physically. I get breathless just trying to get dressed and even making a cup of tea or washing the pots can be difficult, which are all things that most people take for granted. It also affects me mentally and emotionally all of the time. I’ve lost a lot of confidence.

“PH is an invisible illness and people don’t see the struggle that goes on inside. Having pulmonary hypertension is frustrating, debilitating and scary and it’s really important that it’s understood by more people.”

As part of PH Awareness Week, the PHA UK is encouraging people affected by the condition to hold ‘Tea and Talk’ events with family, friends and colleagues; write to their GPs to help them understand more about PH; take part in fundraising activities and share their stories on social media.

The charity is also supporting a 200-mile awareness-raising cycle challenge, which takes place from Wednesday 24 – Friday 26 October. The group of medical professionals, riding under the name of Team PHenomenal Hope, will set off from the PHA UK headquarters in Sheffield and finish in London, visiting Royal Papworth Hospital in Cambridge along the way.

To find out more about pulmonary hypertension or get involved with PH Awareness Week visit www.phauk.org. Search #PHWeek18 and #LetsTalkPH on social media.

 

Notes to Editor

A video of Pam talking about life with PH can be accessed here. The original file is available on request.

Further case studies are available.

Iain Armstrong and other PH patients are available for interview, please contact Mary Ferguson at Capital B Media on 01226 766900 or at mary@capitalbmedia.co.uk

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. The full report can be accessed here

PH Awareness Week was launched by the PHA UK in 2016 and this is the third year the campaign has taken place.

 

Last medically reviewed: October, 2018 • October, 2021