Kingussie grandmother with 'invisible illness' no longer prisoner in own home
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A Kingussie grandmother with a rare lung and heart disease is backing a national awareness week to help more people understand her condition.
Carol Duffus, (69), was diagnosed with pulmonary hypertension (PH) in 2016.
She now takes life-saving medication and must spend 16 hours a day on an oxygen machine.
After suffering with breathlessness and blue lips, Carol was told she had the condition eight years after being diagnosed with a connective tissue disorder.
PH affects just 8000 people in the UK. It causes high pressure in the pulmonary arteries – the blood vessels connecting the heart and lungs – and there is no cure.
Carol is sharing her story in support of PH Awareness Week, which takes place from next Monday to November 7 and has been organised by the national charity PHA UK.
The retired receptionist said: “No-one would know that I have this health condition just from looking at me. I try to explain what’s going on as best I can, but it’s a complicated disease.
"I always get people telling me how well I look, so most of the time I just say thank you and get on with things.
“If there was a little more understanding, things would be easier for those us that live with this disease.”
As well as breathlessness, symptoms of PH can include fatigue, blackouts, chest pain, and swelling around the ankles, arms and stomach. Medication can help people have a better quality of life, but there is no cure.
Carol receives treatment from the Scottish Pulmonary Vascular Disease Unit at the Golden Jubilee Hospital in Glasgow, one of just nine specialist treatment centres in the UK and Ireland.
“I used to be so breathless that I felt like a prisoner in the house”, said the grandmother of four, “but now, because of the medication, I feel I’m getting some confidence and independence back.”
Carol has been told that eventually, she will need to have medication delivered to her heart 24 hours a day via a line inserted into her chest. For now though, she is taking every day as it comes.
“I still have things I want to do, but I try not to think too much about the future. What will be, will be.”
Dr Iain Armstrong, chair of the PHA UK, said: “Pulmonary hypertension can have a devastating impact on people’s lives and as an ‘invisible illness’ it’s vital that more people are aware of it.
"We’re grateful to Carol for sharing her story and we hope it makes a difference.”
About pulmonary hypertension (PH)
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.
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.
To find out more about pulmonary hypertension click here
