PULMONARY hypertension is usually a terminal condition so it may seem strange that few people have ever heard of it and even some experts in the medical profession can fail to diagnose it.

But a Worcester woman who has this rare and potentially fatal condition hopes she can help change that for good.

The condition is described by the Pulmonary Hypertension Association as “a rare, life-threatening lung disease in which blood pressure in the arteries of the lungs elevates, putting stress on the heart and reducing the amount of oxygen that is able to reach the tissues of the body”.

Wendy Harding did not even know she had it until nine months after she collapsed following a pulmonary embolism in her bedroom at home in Blackpole Road last October.

The 49-year-old was lucky to survive and spent a week in intensive car at the city's Worcestershire Royal Hospital.

Before this she had been told that her symptoms, which include severe shortness of breath, blue lips (cyanosis) and heart palpitations were asthma, bronchitis, or chronic obstructive pulmonary disease (COPD) caused by her smoking.

Even though Mrs Harding also suffers from emphysema, which is one of the conditions which falls under the umbrella of COPD, she has since been told by specialists her pulmonary hypertension has nothing to do with her smoking.

She said: “Before I collapsed I felt like I was having a heart attack. Fortunately my daughter and husband were there and my husband called for an ambulance. I was very lucky to survive and even after that it wasn’t diagnosed.

“It was very worrying when I was eventually told I had a life-threatening condition. On the other hand, at least after diagnosis I knew what I was dealing with. Apparently not many people survive. I was totally out cold when I collapsed. I don’t know whether it was luck or it just wasn’t my turn to go that day.

“I collapsed again a month ago. You feel this heat and this pressure rising and then your heart starts pumping and pumping and you get chest pains. Your heart is trying to deal with the blood pressure and you start to get very breathless. It puts tremendous stress on the heart, even though my heart is actually very healthy.”

She was diagnosed with pulmonary hypertension in July this year following tests conducted at the Royal Hallamshire Hospital in Sheffield, managed by the Sheffield Teaching Hospitals NHS Foundation Trust which she says has provided excellent care even though it is a six-hour round trip.

The assessment involved a CT scan, the insertion of a right heart catheter and walking test.

Iain Armstrong, a consultant nurse in pulmonary vascular disease from the Sheffield trust, summed up the widespread ignorance about this condition in a letter to Mrs Harding.

He wrote: “This condition is generally not well understood in the general medical profession at large and certainly not within many of the bodies set up to help and support people with life-threatening chronic conditions.”

Mrs Harding, who is married with two children and two grandchildren, said: “I have been told it is terminal and there is no cure but hopefully the treatment I get will give me a better quality of life.”

There is no surgical procedure that provides any solution in what can be an intensely frightening and unpredictable condition.

She takes a medication called Sildenafil three times a day, which makes it easier for her heart to pump blood around the body, and Warfarin once a day to thin her blood to prevent it clotting.

She has been surprised by how much ignorance there is about pulmonary hypertension and she is determined to make people in Worcester and further afield more aware of the condition through an event later this month.

“I’m trying to raise awareness. There could be somebody in the area struggling to breathe who thinks they just have asthma,” she said.

The condition can not only be physically debilitating but an emotional and psychological burden to sufferers and their families.

Those with the condition know it is likely to one day prove fatal which means it places a strain not only on the body, but on the mind.

Someone with pulmonary hypertension not only has to come to terms with their physical shortcomings, such as breathlessness climbing the stairs, but with the mental anguish of living day-by-day with a health problem that is life-threatening, but Mrs Harding is blessed with a strong and positive personality.

She said: “I have looked at funeral arrangements but we just try and get on with life. Fortunately, I am a very positive person.”

l Mrs Harding has organised an event to raise awareness about PH at the Coppertops pub in Oldbury Road, St John’s, Worcester.

The evening, which is free to enter, takes place on Saturday, November 28, from 7pm.

There will be karaoke, raffle prizes, a disco and a DJ and the opportunity to give donations to the Pulmonary Hypertension Association.

Everybody is asked to wear something blue to help raise awareness – blue symbolises the colour change in the lips of people who have PH.

Mrs Harding wished to issue her personal thanks to those people who had helped with the event, particularly the Worcester Round Table, which donated a flat-screen television.