Sutton woman with rare lung disease wants more understanding of her condition

Lou Chadburn, 40, lives on Stoneyford Road and was diagnosed with pulmonary hypertension in 2012.

The disease, which affects just 7,000 people in the UK, causes high pressure in the blood vessels connecting the heart and lungs.

Lou lives with a type of PH called chronic thromboembolic pulmonary hypertension (CTEPH), caused by a build-up of blood clots in the pulmonary arteries.

PH Awareness Week takes place November 4-10 and has been organised by the Pulmonary Hypertension Association (PHA UK), a national charity that supports those with the condition.

Lou said: “It was very upsetting to be told I had PH and I immediately worried about how long I would have left. It was a relief to be told that the type I had could be operated on.”

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

Her blood clots were cleared, and to help prevent them returning she must take blood thinners for the rest of her life.

She still suffers with breathlessness and tiredness, but said she feels lucky to be able to work and live a ‘fairly normal’ life.

She added: “I do have to rely on people more than I used to, and I am a bit more vulnerable, but I view life a lot differently since I became ill. I have good days and bad days but when I get down, I thank my lucky stars that I’m still here.”

PH Week aims to raise awareness of pulmonary hypertension and promote understanding of ‘invisible’ illnesses.

As well as breathlessness, other symptoms of PH can include dizziness, fatigue, blackouts and swelling around the ankles, arms and stomach.

Coughing can also be a symptom of CTEPH.

Iain Armstrong, chairman of the PHA UK, said: “Pulmonary hypertension is an extremely serious condition that has a huge impact on people’s lives.

"You often can’t tell someone has PH just by looking at them - so encouraging understanding of this rare, devastating condition is vital."

The PHA UK is based in Sheffield and works nationally to support people affected by pulmonary hypertension.

To find out more about pulmonary hypertension or get involved with PH Awareness Week visit www.phauk.org or search #PHWeek19 and #TogetherForPH on social media.