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'It’s better than winning the lottery'

Over 250,000 people have now taken part in clinical trials and studies in Southampton.

One of those participants is cystic fibrosis patient Luke Southey.

Research into new treatments and advances in healthcare are enabling people with cystic fibrosis to live longer and healthier lives.

The median survival age in the 1950s is reported to have been between four and five years of age. The Cystic Fibrosis Foundation now estimates that babies born between 2018 and 2022 will have a life expectancy of 56 years.

Luke says taking part in a modulator trial at University Hospital Southampton has turned his life around.

Luke’s story

Luke was first diagnosed with cystic fibrosis when he was two years old. His mum Vicki says she felt relieved because he’d been very unwell, and she was glad it was treatable.

When he was around the age of nine, he was admitted to hospital with a bad lung infection. This meant he needed regular trips to the hospital for intravenous (IV) infusions of medicine.

“After that, it had more of an impact,” Vicki explains, “because we were in hospital every 12 weeks for two weeks of IVs, and that continued right up to when he started the trial at 15. So that was quite a hard six years for him, and his brothers, and all of us really.”

Luke’s condition deteriorated even further – coughing up a lot of blood, losing a lot of weight and struggling with his breathing. He needed to have the IV treatment every four weeks.

Clinical research

Then he was accepted onto a new trial at the NIHR Southampton Clinical Research Facility, testing a new treatment made by Vertex Pharmaceuticals. His mum cried tears of joy when she received the news.

“I actually remember saying ‘it’s better than winning the lottery’,” she says. “I was just absolutely ecstatic that he was getting the chance to start this new drug.”

“To me, it was just another medication to try,” says Luke. “But this one – I didn’t realise how much of a big effect it would have.”

Before the trial, neither Luke nor his mum thought he would be sitting his GCSEs or going to college. He used to have to go to hospital every few weeks, when he started coughing up blood, but he says that’s not happened at all in the last five years. Now aged 20, he’s passed his driving test, got a job and can go out with friends and live life to the full.

“Last year, I asked my mum ‘if I wasn’t on this medication, where would I be now?’,” he says, “and I know it sounds horrible to say, but we didn’t think I’d be alive. So it’s had a massive impact.”

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