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The Importance of Understanding Cystic Fibrosis

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The Importance of Understanding Cystic Fibrosis
In light of CF being the UK 's most common genetic disease, it is vital parents understand the common gene defect and what the symptoms are in newborns.

For those unaware of a family history of CF or unaware they are carriers, an education on CF is important. Mums should not consider themselves paranoid if they feel something is wrong. Especially first-time parents who are not exactly sure the differences between normal and problem nappies. Looking out for the tell-tale signs can mean the difference of receiving treatment early and minimising the disease from the earliest age. Some children are only diagnosed at 8 or 9 years old and the symptoms are dismissed for something else. This means they have lost out on 8 or 9 years of treatment.

For parents who have CF babies, it is also important to stress that there is strong support from The Cystic Fibrosis Trust and there are expert patient advisors who are sufferers themselves and who help families deal with the difficult news. There are regional support centres and loads of exciting fundraising events where people can meet and share experiences.

The future of CF is that the cure is close, but gene therapy, the ambition for scientists, requires millions of pounds. But the message is that there is hope and many CF sufferers lead happy, active lives.


James' Story

Carolyn, 31 and husband Greville from Boston and their kids Matthew, 8 and James, 3 who suffers from CF. A middle child, Rebecca, was stillborn one year before James ' birth...

James Bray, three, was diagnosed with Cystic Fibrosis (CF) during a heel prick test when he was just three weeks old. One year prior to James ' birth, the Brays ' second child Rebecca was still-born, so after getting through the pregnancy they were elated when James was born. But then to find out a few weeks later he had CF just turned their world upside down. CF sufferers only have a life expectancy of about 31 years.

CF affects a number of organs in the body, particularly the lungs, by clogging them with
Cystic Fibrosis
thick, sticky mucus. Carolyn and James's father Greville said the diagnosis came as a devastating shock. "It had a massive impact on our lives."

For a child to be born with CF, both parents have to be carriers - neither Carolyn nor Greville knew they were. Especially since their eldest son, Matthew, is perfectly healthy. Carolyn started noticing unusually bad nappies and a very distinct and harsh smell, but because of the loss of her previous baby, had convinced herself she was being paranoid and that it was as a result of her eating badly. Only after three weeks and a heel-prick test, was she informed on her birthday that James had CF. He had to undergo a gruelling routine of daily physiotherapy to keep his lungs clear, and a cocktail of antibiotics and vitamins to keep infection at bay. He also has to take enzymes with every meal and snack to help his digestion.

Regular trips are made to Pilgrim Hospital, and if James becomes particularly poorly he has to go on a nebuliser. Carolyn said: "James copes with it because he doesn't know any different. It's just hard sometimes because like every two-year-old if he sees crisps or chocolate he just puts them straight in his mouth, but we have to snatch them off him or he will suffer later."
"If we are having a gathering anyone with a cold has to stay away or we have to keep James away from them."

James featured in a pin-up calendar along with other youngsters from across the UK who suffer from cystic fibrosis, where he was Mr July.

For Further Information and Support, see The Cystic Fibrosis Trust site.

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