Milton of Leys mum to raise awareness of life-limiting condition
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Pauline Harrison, who lives in Milton of Leys, has pulmonary hypertension (PH), a life-limiting illness that causes high blood pressure in the blood vessels connecting the heart and lungs.
She is speaking out following the results of a survey by the Pulmonary Hypertension Association (PHA UK), which shows PH has a major impact on people’s quality of life.
Pauline (42), was diagnosed when she was seven months pregnant with her son. She said: "Because it’s a rare disease, people can be quite ignorant. I’m not taking anything away from well-known conditions like cancer, but pulmonary hypertension is a serious illness too – and more people need to know about it.
"The PH is always there in the back of my mind. It feels like I’m sitting on death row, that’s the only way I can describe it. Fatigue is the hardest thing. It does sometimes get the better of me, and it does affect my quality of life. I try not to let the condition control me, but it does sometimes. I can’t even walk my boy to school because there’s a steep hill in the way. It’s everyday things like that, which most people take for granted."
Pulmonary hypertension is very rare, affecting just 7000 out of 64 million people in the UK. Symptoms typically involve breathlessness, fatigue, black-outs and swelling around the ankles, arms and stomach. It affects the ability to carry out basic tasks and get around.
The Living with PH Survey, which looked at all aspects of life with PH, discovered that emotional and mental wellbeing, and relationships with family and friends, are severely affected by the condition. It also revealed that 48 per cent of patients waited more than a year after first experiencing symptoms before being diagnosed, and 40 per cent had to see four or more doctors.
Pauline, who is treated at the Golden Jubilee Hospital in Glasgow, added: "I knew there was something wrong right from the beginning but no-one would believe me. I saw four different doctors and it felt like I was banging my head against a wall. The fifth doctor I saw thought I must have been in labour because I was so breathless, and this finally led to me having tests and being referred to the Scottish Pulmonary Vascular Disease Unit at the Golden Jubilee Hospital in Glasgow.
"The next day, at seven months pregnant, I was given the news that I had pulmonary hypertension. I cried 24/7 and I felt angry. I had always looked after myself, so why this?"
Pauline’s son, Ciaran, was delivered early by caesarean section a week after she was diagnosed and is now seven years old.
Almost 600 patients responded to the Living with Pulmonary Hypertension survey, which reveals that concerns about life expectancy have the biggest impact on quality of life – with more than 50 per cent reporting a ‘major impact’. Almost two thirds (63 per cent) said that financial worries had an impact on their lives.
The PHA UK is using the results of its survey to campaign for public policy changes that will improve quality of life for people with PH.
Its chairman, Iain Armstrong, said: "This survey show just how much the condition impacts upon quality of life for patients and their loved ones. This provides concrete evidence which can be used to address the crucial need for targeted treatment."
