A FILLONGLEY woman, who suffers from a rare condition which causes high blood pressure, is backing a national campaign to raise awareness of the disease.
Having been given the devastated news by doctors that her only chance at survival was a heart and lung transplant, Sue Townsley is speaking out about life with pulmonary hypertension (PH) – and is encouraging others to do the same.
The 49-year-old was was diagnosed with PH 17 years ago, when she was just 32 years old.
The very rare disease, which causes high blood pressure in the blood vessels connecting the heart and lungs, affects just 7,000 people in the UK and can develop at any time in a person’s life and can affect anyone – regardless of age or ethnic background, though it statistically affects more women than men.
Symptoms of PH include breathlessness, fatigue, black-outs and swelling around the ankles, arms and stomach – affecting a sufferer’s ability to carry out basic tasks and get around and their emotional well-being.
Sue said: “When I learnt I had pulmonary hypertension I was told my only hope was a heart and lung transplant.
“Just getting off a chair left me breathless but I refused to accept that I would not see my children grow up.
“In the 17 years since I was diagnosed PH treatment options have grown.
“I thought I was doomed, but now I look forward to my 50th birthday.”
But despite the advances in PH treatments over the last 15 years, there is still no cure.
And with the added worries that PH can bring, the disease often puts a strain on the sufferer’s heart – leading to irreversible damage and heart failure.
Iain Armstrong, chair of Pulmonary Hypertension Association UK (PHA UK) said: “PH is a life-limiting and life-threatening disease, but people with the condition often look well at rest and it’s only through a simple activity such as climbing the stairs that they may experience symptoms.
“Our members often tell us how frustrating it is to have an ‘invisible illness’ which most people just don’t see and recognise it as serious.
“They tell us how much it would help if more people were aware of it.
“They also say that they find it hard to talk about how PH makes them feel with friends and family.”
As a result, PHA UK organised PH Awareness Week (which ran from November 19 until November 27) to help people talk openly about the disease and to raise awareness and understanding of the condition.
PHA UK is the only charity in the UK dedicated to supporting the PH community made up of patients, their family and carers and NHS professionals.
It provides information, support and advice and funds thousands of pounds worth of medical research and health education initiatives to promote better awareness, diagnosis and treatment of the disease.
Visit www.phauk.org to find out more about Pulmonary Hypertension.
