WHEN Sophie Longton was just eight years old doctors told her she may not live to see her 20th birthday.
Sophie was given the devastating news she was suffering from Cystic Fibrosis – a disease which has no cure.
The condition is the most common life-threatening illness in the UK and to many it would seem like a death sentence.
But for Sophie, of Woodhead Road, Read, it has given her a thirst for life that has seen her become an ambassador for the CF Trust, address politicians at the Labour Party Conference and interview leading genome scientists for BBC’s Horizon programme.
The former Clitheroe Royal Grammar School Sixth Form pupil, who is now 25, campaigns to raise awareness of Cystic Fibrosis and gives talks on the condition to organisations from Padiham Rotary Club to multi-national pharmaceutical giant GlaxoSmithKline.
Sophie said: “I tell people – can you imagine waking up every day and coughing up thick green mucus? Can you imagine taking 30 tablets and doing two hours of treatment every single day? Can you imagine knowing that unless a cure is found, your life will be cut short by Cystic Fibrosis?
“This is how it affects my life and this is what I have to do.”
Sophie, an academic mentor at Mount Carmel High School, Accrington, admits every day is a battle with the disease.
The inherited condition means her lungs are affected by mucus which causes chest infections and can leave lasting damage. Cystic Fibrosis also affects the digestive system and Sophie has developed pancreatitis which leaves her with severe pain.
Sophie has had to undergo two hours of physio every morning since she was eight to clear mucus from her lungs as well as a daily cocktail of medicine.
“It is a big change of lifestyle. I was eight when I was diagnosed. It was a huge shock. Every single day from that day to this I have done two hours of physio.
“It is not something I enjoy. I feel sick, I cough up blood and sometimes I’m sick because I cough so much. But I have no choice. I have got to get through those days.”
Exercise has played a huge part in keeping Sophie’s lungs functioning. She started running aged eight, became a champion cross-country and netball captain at school and still goes jogging every evening after work.
Many people think a life-limiting illness would limit someone’s life – but not Sophie – she lives life to the full.
“I try to never let it stop me doing anything,” she said. “It actually makes me do more as I want to get more out of life.
“It gives me a zest for life and it has opened up some amazing opportunities for me.”
She became an ambassador for the CF Trust at 16. The position has meant she travels around the country giving talks on her experiences of Cystic Fibrosis.
A YouTube video Sophie made as she underwent intensive anti-biotics treatment for a chest infection went viral around the world with more than 150,000 hits.
She was chosen to feature on the BBC’s Horizon programme “Miracle Cure? A Decade of the Human Genome” about the future of treatments.
She said: “It gave me such an insight into making a documentary. Meeting and interviewing the scientists was amazing. They are the people at the forefront of the research.
“They have been researching for 10 years and spent £30m. They are testing it on 130 patients who inhale the gene therapy treatment every month for a year. The fault copy of the genes is replaced by the healthy copy. Then they will analyse the results.”
It has given her fresh hope of a cure after many false dawns and Sophie is determined to stay fighting fit for the day scientists make that vital breakthrough.
“I cannot benefit from anything unless I keep myself well. The more physio and exercise and treatment I get the better I feel. My hard work has been paying off because my lung function is the best it has been.”
But for now Sophie will keep on campaigning and raising awareness of CF. She is days away from moving to Australia where she hopes to volunteer for the Cystic Fibrosis organisation in Perth.
Her friend Tamsin is running the London Marathon to raise money for CF and Sophie is urging people to sponsor her at http://uk.virginmoneygiving.com/TamsinRidgwell