Hillsborough grandmother in bid to raise awareness of rare disease

A HILLSBOROUGH grandmother living with a rare heart and lung disease is backing a national awareness week to help people understand the condition.

Pam Ellis, 62, was diagnosed with pulmonary hypertension (PH) three years ago. The serious disease, which affects just 7000 people in the UK, causes high pressure in the blood vessels connecting the heart and lungs.

PH Awareness Week 2018 takes place from October 22- 29 and has been organised by Sheffield-based charity the Pulmonary Hypertension Association (PHA UK), who work nationally to support those affected by the lifeshortening condition.

Pam, who has three grandchildren, 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.”

Symptoms of PH include severe breathlessness, fatigue, blackouts and swelling around the ankles, arms and stomach. There is no cure.

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.

Iain Armstrong, chair of the PHA UK, which is based in Chapeltown, 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 encouraging people to talk about the disease during this awareness week is so vital.”

Pam receives treatment at the Royal Hallamshire Hospital, one of just nine specialist PH treatment centres in the UK.

She added:

Being diagnosed with PH felt like a bombshell. I had never heard of it and I felt lost. It was difficult to tell other people too because they didn’t know what it was either."

PH has really limited what I can do, both physically and mentally, and it’s really unpredictable. The hardest thing for me is the frustration of feeling I can’t do what I should be able to do at this age. But friends, family and my beautiful grandchildren keep me going and I try and stay positive for them.”

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

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 Chapeltown 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.