independent

Thursday 17 April 2014

We have the highest rate of cystic fibrosis in the world

Ireland not only has the highest incidence of cystic fibrosis in the world, but also the largest proportion of families with more than one child suffering from condition.

Ireland not only has the highest incidence of cystic fibrosis in the world, but also the largest proportion of families with more than one child suffering from condition. The pattern has highlighted in the annual report of the Cystic Fibrosis Registry of Ireland.

Cystic fibrosis is an inherited condition that affects many body functions such as breathing, digestion and reproduction. The lifelong condition becomes more severe with age and the majority have respiratory and digestive problems.

The registry is aimed at providing accurate statistics on the numbers of people affected, the nature of their condition, infection and treatment. It predicts that, as the population increases, the numbers of children with the condition will rise by 7% up to 2010, and the adult group will grow by 25%.

A total of 583 people are now enrolled with the registry– more than half the number of sufferers of the disease. The report describes the high number of siblings in one family with cystic fibrosis here as an “exceptional statistic”.

“In 2005 we documented many sibling pairs and triples,” it said. There are 527 families represented in the registry and it found there were 45 sibling pairs, including three sets of twins. There are also four families with three children with cystic fibrosis.

“This is very interesting from an international viewpoint. These families could provide informative data about infections, the rate of cross-infection within family units and other complications.”

The report points out that not all symptoms of the condition are apparent at birth and this can delay diagnosis. “If we compare those who were diagnosed in less than 12 months, thereisa difference favouring males.”

It showed that 49% of males and 45% of females are diagnosed in less than three months. Nearly three quarters of males but just 67% of females are diagnosed in less than one year. The report suggested the difference in the time of diagnosis may be due to the emergence of symptoms in both sexes.

There has been ongoing criticism of facilities for cystic fibrosis patients in the main treatment centre at St Vincent's Hospital in Dublin.

Cystic fibrosis facts

One in 20 people are carriers of the cystic fibrosis gene

Where two parents are carriers, there is a one-in-four chance their child will develop the condition

People with cystic fibrosis are constantly prone to chest infections and malnutrition

See the Cystic Fibrosis Association of Ireland website for more information: www.cfireland.ie

Eilish O’Regan
HEALTH & LIVING

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