Charlton woman's life turned upside down by rare disease
A Charlton woman with a rare condition is calling for more awareness of the disease after years of waiting for a diagnosis and the severe effect it has had on her life.
Sarah Marshall has pulmonary hypertension (PH), a life-limiting illness that causes high blood pressure in the blood vessels connecting the heart and lungs.
The 36-year-old was diagnosed in 2013 and her life changed overnight after eight years of confusion at her sudden poor fitness.
She had to give up her job as a primary school teacher and is now awaiting a double lung transplant.
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“PH has had a massive effect on my life. I basically now have to spend all my time in my house, alone with my dog every day,” she said.
“I can’t walk up the stairs easily, so I have to stay downstairs all day.
“If I want to talk on the phone, stand up to turn the TV off, or do the washing up, I have to use an oxygen machine. Outside of the house I have to use a mobility scooter.
“Before I was diagnosed, I was on a reasonably good income as a teacher.
“But after being diagnosed I was medically retired, on a small pension as I was young, and I found myself having to rely on the benefits system for the first time. It’s been incredibly difficult.”
PH is very rare, affecting just 7,000 people in the UK.
Sarah said she used to be really active but suddenly struggled to keep up with her friends and doctors told her it was anxiety. One day she collapsed and six months later, she was told she had PH.
“Although it was hard hearing how poorly I was, it was actually a relief to finally know what was wrong,” she said.
A Pulmonary Hypertension Association UK survey proved PH has a major impact on people’s quality of life.
The survey 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 said that financial worries had an impact on their lives.
PHA UK is using the results to campaign for public policy changes that will improve quality of life for people with PH.
Its advocacy programme, PHocus2021, is aiming to reduce the time to diagnosis, ensure access to treatments and reduce financial hardship incurred by living with the disease.
PHA UK chairman Iain Armstrong said: “Everyday life can be very challenging for people with pulmonary hypertension and the results of this survey show just how much the condition impacts upon quality of life for patients and their loved ones.
“This was vital research into what it means to have PH in the UK today and it provides concrete evidence which can be used to address the crucial need for targeted treatment and specialist care.”
Symptoms of PH typically involve breathlessness, fatigue, black-outs and swelling around the ankles, arms and stomach. PH affects the ability to carry out basic tasks and get around.
Adult patients with PH are treated at seven specialist centres across the UK, and children with the disease are treated at Great Ormond Street Children’s Hospital in London.
For further information about pulmonary hypertension visit www.phauk.org, call the PHA UK office on 01709 761450 or e-mail [email protected]