A woman with a rare lung and heart disease is calling for more understanding of invisible illnesses.

Lou Chadburn, 42, of Forest Town, was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in 2012 and had lif-saving surgery a year later.

Despite looking healthy, Lou still suffers with breathlessness and fatigue, and is backing a national campaign to help more people understand ‘hidden’ diseases.

She is sharing her story in support of PH Awareness Week, which takes place from 1st to 7th November and has been organised by the national charity PHA UK.

PH affects just 8,000 people in the UK. It causes high pressure in the pulmonary arteries – the blood vessels connecting the heart and lungs – and the type that Lou lives with, CTEPH, is caused by a build-up of blood clots. Just 400 people have this type of PH.

“At first I thought I just had a cold”, said Lou, “but I wasn’t breathing well, and my lips turned blue, and I ended up being put into an induced coma. When I was told I had pulmonary hypertension, my feeling was simply that I was going to die. I do feel like I’ve been given a second chance.”

Lou had major surgery, known as a pulmonary endarterectomy, at Royal Papworth Hospital in Cambridge in October 2013.

The operation involved surgeons draining her body of all blood to clear the clots in her arteries and lowering her body temperature by half – meaning she was technically dead. After the clots had been removed, the blood was refilled and her temperature increased, effectively bringing her back to life.

The operation was a success, but to help prevent the clots returning, Lou must take blood thinners for the rest of her life.

She still suffers with fatigue and some breathlessness and finds it difficult to explain her condition to people.

“Pulmonary hypertension is rare and quite complex, and you can’t tell someone has it just by looking at them,” she added. “I just want people to understand that you never know what’s going on in someone’s life, or what they are dealing with.”

As well as breathlessness, symptoms of PH can include fatigue, blackouts, chest pain, and swelling around the ankles, arms and stomach. Coughing can also be a symptom of CTEPH.

Dr Iain Armstrong, chair of the PHA UK, said: “Pulmonary hypertension can have a devastating impact on people’s lives and as an ‘invisible illness’ it’s vital that more people are aware of it. We’re grateful to Lou for sharing her story and we hope it makes a difference.”

To find out more about pulmonary hypertension, visit www.phauk.org

You can watch Lou and her husband, Tony, talk about life with a serious illness in this video.