With so much doom and gloom in the news at the moment, it’s heartwarming when you read about the advances in treatment for conditions such as cystic fibrosis. One such positive news story is around Kaftrio.
The so-called ‘miracle drug’ Kaftrio is available to patients thanks to a “landmark” deal made by NHS England in June 2020, and was then approved for use by children aged six to 11 in January 2022.
Over there last few months there have been wonderful headlines about the transformation it’s made in a number of children’s lives. Up and down the country – from Liverpool to Belfast and many places in between – children have been benefitting from the new drug. The transformation can be incredible: one little girl aged seven was delighted when she felt the drug begin to take effect and make a difference to within just three hours of beginning her treatment.
What is cystic fibrosis?
Cystic fibrosis is an inherited condition that’s degenerative and incurable. Affecting around 10,800 people in the UK, the condition is split equally between men & women. One in 25 of us carries the faulty gene that causes CF, usually without being aware that we are a carrier. If there is a history of CF in your family, your partner’s family, or if you already have a child with CF, you may decide to be tested to see if you are a carrier of the faulty gene. This test comes in the form of a mouthwash or blood test.
What are the symptoms?
People with cystic fibrosis suffer from a build-up of thick sticky mucus in the lungs, digestive system and other organs. This is because the gene affected by CF controls the movement of salt and water in and out of cells. When you live with CF your daily life is constantly challenged by symptoms that can affect your whole body. Respiratory physiotherapy in most cases forms an internal part of daily life.
How are these revolutionary treatments making a difference?
Kaftrio is a triple combination treatment that combines three drugs that each perform a different function. Taken twice a day, it helps to make patients’ lungs clear and significantly improves lung function, helping people with cystic fibrosis to breathe more easily and enhancing their overall quality of life.
It doesn’t just treat the symptoms of cystic fibrosis, it treats the underlying causes of the condition which in turn helps to boost lung function. It really is a good news story making an incredible difference to quality of life.
Wear yellow for this year’s CF week!
Every year for a week in June the Cystic Fibrosis Trust runs #CFWeek – a week dedicated to focusing on CF, raising awareness and boosting their fundraising activities. This year’s theme which begins on 13th June is all about uniting for a life unlimited. For a life without the constant worry about meds and hospital appointments. Without the financial burden CF can bring. Without daily pain and exhaustion. A life without lack of awareness and misconceptions. A life without limits.
And on Friday the 17th June they encourage everyone to join in Wear Yellow Day… time to raid the wardrobe!