Woman with lung disease is fed up with being judged
SHE SUFFERS FROM HYPERTENSION
A Great-grandmother from Goole with a life-shortening lung disease is raising awareness for the condition after being judged for using a mobility scooter and disabled parking bays.
Pam Fenton, 65, of Rawcliffe, was diagnosed with the rare condition pulmonary hypertension (PH) in 2018.
She has medication pumped straight to her heart via a line inserted into her chest to keep her alive and relies on oxygen cylinders to breathe.
Pam, who is treated at a specialist centre in Sheffield, suffered with breathlessness, fatigue and blackouts for five years before her diagnosis.
She was wrongly told by doctors she had asthma or angina and describes the time as “the worst years of my life”.
Pam said: “It’s hard to explain how much the breathlessness affects me. Sometimes I can’t get a sentence out and sometimes I can’t get out of bed. It’s a horrible disease and I wouldn’t wish it on anyone.
“I do worry about the future, I want to see my great-grandchildren grow up, but this disease does frighten me. And one of the hardest parts is that people don’t understand how serious it is.
“They think there is nothing wrong with me because I don’t look any different on the outside.
“They don’t understand why I have to use a mobility scooter to go shopping, or why I park in a disabled bay. It’s not high blood pressure; I literally can’t breathe.”
Pam is sharing her story in support of PH Awareness Week, which takes place from November 1 to 7, and has been organised by the Sheffield-based national charity PHA UK.
PH affects just 8,000 people in the UK. It causes high pressure in the pulmonary arteries - the blood vessels connecting the heart and lungs - and leaves Pam so short of breath that she struggles to move from one room to another.
There is no cure, and the condition can eventually cause heart failure.
People can be born with PH or develop it at any time, and it can affect any age or ethnic background. It affects more women than men.
A range of highly advanced treatments developed over the last 20 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 and Ireland, based within hospitals in Sheffield, London, Glasgow, Cambridge, Newcastle and Dublin. Great Ormond Street Children’s Hospital houses the only specialist centre for children.
As well as severe breathlessness, symptoms of PH can include fatigue, blackouts and swelling around the ankles, arms and stomach. It is often misdiagnosed as asthma or anxiety.
Dr Iain Armstrong, chair of the PHA UK, said: “Pulmonary hypertension has a devastating impact on people’s lives.”
To find out more about pulmonary hypertension, visit www.phauk.org