LIVING with the fear that your heart could give out at any moment is something brave Karen Farminer knows all about.
Karen, 50, has been coping for more than 22 years with pulmonary hypertension, a condition so rare that only 3 per cent of people are said to have heard of it, and even some health professionals don’t know what it is.
The incurable disorder, which causes severe breathing difficulties and puts the heart under immense strain, struck Karen when she was pregnant with her third child back in 1988.
“I was fine, it literally just came on,” said Karen, of Blackmores, Laindon.
“I’d had two children before, but when I was pregnant with my third I started feeling ill and dizzy and developed asthma.
“At first I just put it down to being pregnant, but a blood test revealed I had the condition.
“I had seven blood clots on my lungs and was told that I might not make it. They also warned me that something could go wrong with the pregnancy.”
But luckily for Karen the birth of her third daughter, Leanne, now 22, went to plan and she grew up to be perfectly healthy.
Karen added: “After Leanne was born they virtually told me the pulmonary hypertension could kill me at any moment. I went through a terrible time. I was scared to go out and I stayed in my house for three months.
“I was worried I would just drop down dead.”
As treatment for the disorder has progressed over the past two decades Karen has been given a cocktail of drugs to try to keep her condition in check, however there is no cure.
“The drugs basically keep me alive,” she said.
“I’ve been rushed to Basildon Hospital several times over the years with various problems due to the condition, and they’ve saved my life a few times.
“The hospital gets knocked a lot, but I’ve always had brilliant treatment there.
“I have my down days, but I just try to stay positive. I’m a grandmother now and have two lovely grandsons who brighten up my life, so I can’t complain.”
Karen, who is cared for by husband Jez, 40, is a member of the pulmonary hypertension Association and is helping the charity to raise awareness to the disorder.
She added: “Research shows that lack of awareness of pulmonary hypertension can delay a correct diagnosis of the condition for as much as two to three years.
“For those of us who have been diagnosed, public ignorance can make living with pulmonary hypertension very difficult.”
Karen stressed: “It’s not just the public who don’t know about it – a lot of the medical profession are ignorant of the condition.
“Recently I was being treated by a nurse and she had to ask me what pulmonary hypertension was!”
Karen will shortly be joining forces with members of 29 pulmonary hypertension patient groups across the world to raise awareness of the condition.
They will also be trying to get more than 40,000 people to provide a blue print of their lips – using blue lipstick – to help set a new Guinness World Record.
As well as getting people to “Pucker Up 4 PH”, Karen and friends will distribute information on pulmonary hypertension.
Paul Pennington from PHA-UK explained the significance of blue lips: “Blue lips or cyanosis, as its medically termed, can indicate the presence of number of conditions including pulmonary hypertension, so we are doing this as a means to try and boost awareness of the condition.”
Karen who as well as Leanne has daughters Eloise, 32 and Sarah, 28, added: “I’m one of the lucky ones. The average life expectancy for someone with pulmonary hypertension is usually two to five years.
“I would like to help get the message across that this disorder is out there – and it can kill if it’s not diagnosed quickly enough.”