Inhaler breathing new life into our futures

MEET Lauren Setterfield – a cystic fibrosis sufferer whose future is full of hope thanks to "revolutionary" new treatment that will transform her life until a cure for the devastating disease is found.

For four years, the 20-year-old, of Barcroft Street, Cleethorpes, has taken part in clinical trials for an inhaler which helps combat chronic lung infections that, because of her condition, are an everyday burden.

SISTER ACT: Lauren Setterfield and her sister Robyn, right, with the inhaler that will improve their lives. Picture: Abby Ruston

And this week the experiment paid off, as the TOBI Podhaler – although not suitable for every cystic fibrosis sufferer – was fully licensed and launched to thousands of sufferers who, like Lauren, are desperate to improve their quality of life.

Lauren, whose 11-year-old sister Robyn, also has cystic fibrosis (CF), said: "The inhaler uses a drug I was already taking, but releases it in a different way.

"During the trials it sent my lung function up, which is great because when someone with CF's lung function goes down, it can become difficult to walk around without becoming breathless. It's working really well for me."

Lauren was diagnosed with CF – which affects the lung's ability to clear mucus – when she was just one day old.

This has meant her childhood and early adulthood has been full of operations, daily medicines, physiotherapy, hospital visits and check-ups.

The most time-consuming and inconvenient of all were the two half-hour sessions on a nebuliser she endured every day to feed infection-fighting drugs into her lungs.

But now Lauren has the inhaler, within a couple of minutes of having a puff, she is on her way – freeing up time for socialising with friends and working as a sales assistant at Leading Labels, at Meridian Point.

She said: "It is so much easier for me to keep up full-time work and I am able to socialise with my friends. They told me it would be beneficial and it turned out to be.

"Sometimes having CF makes you want to bang your head against a brick wall. You compare yourself to what other people are doing and you realise that you won't be able to plan for this and that  because you might be in hospital or you might be ill. That is one of the hardest things about it, but you get used to it.

"It will be great for the younger teenagers too because it means you don't have to be strapped into the house; you can take it out with you and it does not need cleaning either."

CF is the most common genetic disease – caused when both parents are carriers – and while there is still no cure, advances in treatment are being made all the time. This has pushed life expectancy up from 20 years old to about 38.

The most exciting breakthrough so far was made by UK-based CF Gene Therapy Consortium, who have been working on a way to insert a healthy gene into a CF patient's lungs for ten years – stopping the faulty CF gene in its tracks and potentially curing the patient.

A fundraising campaign was launched by the Cystic Fibrosis Trust ten years ago, but it still needs to find £6 million if it is to start the first gene therapy trials in the spring.

Lauren, who loves festivals and gigs, said: "The future is looking much brighter for people with cystic fibrosis.

"When I think how many things have changed in the 20 years I have been alive I feel hopeful.

"Give it another 20 years and it will be totally different.

"I do get scared about the future sometimes. Anyone who says they didn't would be lying, but you can't live like that. I just go on as normal.

"I am saving for a house and planning to go to my friend's wedding. I won't let it put a downer on things.

"I definitely think a cure will be found as long as they get the money they need.

"They are so close now and I remain hopeful they'll succeed.

"We can't give up unless they give up and I doubt that will ever happen."

Jo Osmond, director of clinical care and commissioning at the Cystic Fibrosis Trust, said: "People with CF have a very difficult and time-consuming regime of treatments and physiotherapy every single day, so the time saved using tobramycin inhalation powder compared to nebulised tobramycin is significant.

"This may help people with CF to more easily fit their treatments into the day."

Donate at uk.virginmoneygiving.com/CysticFibrosisGeneTherapy-1 or visit www.cftrust.org.uk for more information.