Cystic Fibrosis (CF) is an entirely genetic disease. It’s what’s known as an autosomal recessive condition, which means that it’s a condition inherited from both parents. If both parents have the faulty gene then their child has a 25% chance of being born with the disease. According to the Cystic Fibrosis Trust, CF currently affects around 10,000 people in the UK.
People with Cystic Fibrosis have a sticky mucus in their lungs and in their digestive system which makes it harder for them to breathe and harder for them to digest their food. They need lifelong enzyme replacement therapy to help them digest their food and lifelong treatments to help their lungs function better and to prevent them getting serious lung infections.
There is no cure at the moment, but there is a comprehensive array of treatments that help manage the disease and allow people with the disease to maintain as normal a life as possible.
It is usually diagnosed at birth with a routine heel prick-test. With some babies there is an immediate concern at birth, such as a blockage in the bowel, which requires immediate surgery. Other babies may seem perfectly healthy, but go on to develop persistent lung infections, or fail to thrive – two major signs that they may have CF. An initial diagnosis will be followed up by a full genetic screening, including looking at a full family history, to confirm that the diagnosis is correct.
“The most common problems are recurrent, severe chest infections, diarrhoea, and failure to gain weight,” explains Dr Fysh, Chief Medical Officer at NurtureFirst. “The two main areas affected by CF are the lungs and the digestive system. This is because of the sticky mucus found in both, which in the lungs predisposes them to lung infections. The mucus in the gut prevents the body from producing enough digestive enzymes, which means that food cannot easily be digested and absorbed. Although those with CF may have a voracious appetite, they do not gain weight well and suffer digestive issues such as diarrhoea.
“Some cases are more severe than others, and some babies may not be diagnosed until they are one or even two years old.”
A baby will feed much like any other baby, with breast or bottle milk. However, they may need additional enzymes to help them digest their food and receive enough nutrients from it.
“It’s imperative to spot the signs of lung infection early, and to keep the lungs clear of infection,” explains Dr Fysh. “This is usually done through the use of nebulisers and taking regular antibiotics, as well as regular physiotherapy, which is vital in keeping the lungs clear of the sticky mucus.”
Those first few weeks for parents whose baby has been diagnosed with CF can be a bewildering array of medicines, changes to medicines, tests and trying to understand the treatment necessary, but both health professionals and charitable organisations such as the CF Trust will give vital support to parents in those first few days and months. This includes putting parents in touch with those who have undergone a similar experience.
Although it may seem scary, babies should be treated, as much as possible, just like any other child.
“Historically, those with CF didn’t live very long into adulthood,” says Dr Fysh. “These days, however, with careful management, there are people with CF in the 40s who have married and have families, who live a normal life albeit with a challenging daily routine of medicines and fighting off infection.”
NurtureFirst Future Family Insurance is a unique policy that provides expectant mothers with added assurance from the 20 week scan* through to their child's second birthday. NurtureFirst aims to ease the financial impact of unforeseen costs that can result from conditions - including Cystic Fibrosis.
*NurtureFirst's policy can be accessed following a clear 20 week scan from under £8 a month.
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