Breakthrough treatment for cystic fibrosis gives families hope in West Country
A family from the West Country has told ITV News that a new treatment for people with the life limiting condition cystic fibrosis (CF) has given them real hope for the future.
The triple treatment Kaftrio, has been approved for use by the NHS and will be given to people over the age of 12.
Its discovery is being hailed as a major breakthrough in the treatment of cystic fibrosis as it has been shown to improve lung function by at least ten per cent, and in some cases as much as 40 per cent.
The cystic fibrosis Trust has said it will save lives.
Four year old Sonny Moore from near Padstow in Cornwall was diagnosed with CF when he was just three weeks old.
His mum Sophie said the diagnosis was a relief because it gave them answers to why he had been so poorly in the first days of his life, but she said as a result all of their lives have had to change.
Cystic fibrosis is an illness that causes the pancreas to create too much mucus, which can then clog the lungs and digestive system.
As a result Sonny needs to take medication every time he eats to help him digest food as well as medicine at the beginning and end of every day.
On occasions he has needed to be nebulised and Sophie said his lung function will deteriorate as he gets older.
Another treatment for CF has been introduced in the past few years, but Sonny’s type of CF means it wouldn’t work for him.
But Sophie said the discovery of Kaftrio, and the fact that it would work for Sonny, gave her and her family so much hope for the future.
“You know, one of my biggest worries is I always think of him when he’s, I don’t know why but I imagine him when he’s 16.
"And I always then scare myself because I’m like, what’s it going to be like for him when he’s 16?
"Maybe with this, looking towards the future, it won’t make it such a scary thing, because you know there are developments happening and you know, maybe when I look at him and he’s 16, he has the chance to be like any regular 16 year old, which would be really, really nice.”
Becky Kilgariff from the Cystic Fibrosis Trust said the creation of Kaftrio was one of the most significant changes in CF treatment for many years and would increase life expectancy and the quality of life for patients.
She said, “It’s a really exciting development and really significant for people with cystic fibrosis.
"Data that has been seen through the trials, shows that it can improve lung function by 10-15% but we know of individual cases where that’s been up to 40%.
"It will really truly save lives.”
About Cystic Fibrosis:
Cystic fibrosis is an inherited disease caused by a faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food.
Half of all people who died with cystic fibrosis last year were under the age of 31
There are over 10,509 people with cystic fibrosis living in the UK and the population is growing every year
Two million people in the UK are carrying the faulty gene without realising it. If two carriers have children, there's a one in four chance their child will have the condition, which slowly destroys the lungs and digestive system
People with cystic fibrosis often look perfectly healthy. But it's a lifelong challenge involving a vast daily intake of drugs, time-consuming physiotherapy and isolation from others with the condition. It places a huge burden on those around them and the condition can critically escalate at any moment
Half of people born today with cystic fibrosis are expected to live into to their mid-forties, thanks to earlier diagnosis and ongoing developments in care and treatments
About the Cystic Fibrosis Trust:
The Cystic Fibrosis Trust is the only UK-wide charity dedicated to fighting for a life unlimited for everyone affected by cystic fibrosis
For confidential advice, support and information on any aspect of cystic fibrosis, including help with financial support contact the Cystic Fibrosis Trust helpline on (+44) 0300 373 1000 or 020 3795 2184