A teenage girl from Wallington who has a rare heart and lung condition is campaigning for more awareness of the disease.

Kaylee Mynot, 16, was diagnosed with pulmonary hypertension (PH), a life-limiting illness that causes high blood pressure in the blood vessels connecting the heart and lungs, as a baby.

The Glenthorne High School student receives treatment from Great Ormond Street Hospital.

Kaylee spoke after survey results were published by the Pulmonary Hypertension Association (PHA UK) which proved PH has a major impact on quality of life.

PH affects just 7,000 people in the UK and the survey found emotional and mental well-being and relationships with family members and friends are “severely affected” by the condition.

“I get out of breath easily so at school I don’t do PE, and I get tired quite easily too,” Kaylee said.

“I also have to use an oxygen machine at night. I get annoyed that I can’t do everything my friends can do. I used to be called ‘the slow coach’ at school, and be called names by people who didn’t understand.

“At times I do wonder ‘why me’? Out of everyone, why did pulmonary hypertension pick me? But I’m happy, because I have the most incredible family, so many friends who support me, I’m under the care of the best hospital, and I take life as it comes.”

Kaye Russel, Kaylee’s mum, spoke about when her daughter was diagnosed with PH when she was 11 months old.

She said: “There was so much to take in. We were told she wouldn’t live to be five, and we should go home and enjoy her. That was really hard.

“I do worry about her future. I want her to live a full life and achieve what she wants to achieve. Having a child with PH is worrying and sometimes life does look uncertain.

“But there is help, although it’s hard to seek it sometimes. Kaylee helps make me strong. She is very positive and that helps us as parents as well.”

PH symptoms include breathlessness, fatigue, black-outs and swelling around the ankles, arms and stomach.

Carrying out basic tasks and getting around can also be a struggle.

Chairman of PHA UK, Iain Armstrong, said: “Everyday life can be very challenging for people with pulmonary hypertension and the results of this survey show just how much the condition impacts upon quality of life for patients and their loved ones.

“This was vital research into what it means to have PH in the UK today and it provides concrete evidence which can be used to address the crucial need for targeted treatment and specialist care.”

There is no cure for PH despite advanced treatments being developed in the last 15 years to improve quality of life and life expectancy.