RAISING AWARENESS: Grenoside-based Paula Hartley, 55, has pulmonary hypertension (Images: Your Story Studios)
A Sheffield grandmother with a devastating rare disease is calling for more understanding of invisible illnesses.
Grenoside-based Paula Hartley, 55, has pulmonary hypertension (PH), a life-limiting condition that causes high pressure in the blood vessels connecting the heart and lungs.
She struggles to breathe, is constantly exhausted, and has medication pumped into her heart 24 hours a day – but to look at her, you wouldn’t know that anything is wrong.
Paula is backing an awareness day by a Sheffield charity to encourage understanding of PH and highlight the difficulties of living with hidden disabilities.
PH Day UK takes place on Friday, November 7, and is organised by the Pulmonary Hypertension Association (PHA UK), a national charity working from Chapeltown, that supports people affected by the condition.
Paula, a former pub landlady and grandmother of two, was diagnosed with PH in 2007.
She said: “I don’t look poorly, so it’s hard for people to understand I have such a serious disease.
“I’ve lived it for 18 years now and the symptoms are my whole life.
“If I wasn’t so breathless, and so exhausted all the time, I could do so much more and I could be so much more.”
Paula (pictured above) had a full and busy life before becoming ill, but her symptoms now stop her from enjoying what most people take for granted – including days out with family, social events with friends, and the ability to breathe freely.
Even a simple supermarket trip can mean an afternoon in bed with oxygen therapy to recover.
Paula said: “I had to retire at the age of 40 because of PH and I’d love to be well enough to work again.
“I feel I’m not giving anything back to society and that’s something I really struggle with.
“But having a job is impossible because the breathlessness can come on at any time – one minute I’m fine, and the next I’m clutching my chest and can’t even talk.
“People often stare if it happens in public and even after 18 years it’s hard for my husband to understand, let alone anyone else.”
Paula receives treatment at the Sheffield Pulmonary Vascular Disease Unit, which is based within the Royal Hallamshire Hospital and is one of only eight specialist PH treatment centres in the UK.
Continuous intravenous medication is pumped into her chest by a line connected to a medical device, which she must carry 24 hours a day.
There is no cure for the disease and Paula knows that it will shorten her life.
PH affects just 8,000 people in the UK and those with the condition live with severe breathlessness and fatigue.
Other symptoms include chest pain, dizziness, and swelling of the legs, ankles, feet or abdomen.
Although it can be connected to some other diseases, many people – like Paula – develop PH ‘out of nowhere’.
Dr Iain Armstrong (pictured above), Consultant Nurse in PH at the Royal Hallamshire Hospital and Chairman of the PHA UK, said: “Like Paula, people with PH are forced to cope with hugely challenging symptoms – and they often face judgement by others as they don’t ‘look ill’.
“It’s really important for the general public to understand that not all disabilities are visible, and as cliched as it is, we all just need to be a bit kinder.
“We are grateful to Paula for sharing her story to raise vital awareness of this rare disease.”
2025 marks the 25th anniversary of the PHA UK. To find out more about pulmonary hypertension, visit www.phauk.org
Location: Sheffield, South Yorkshire