HEALTH Mayo Cystic Fibrosis close to reality

Cystic Fibrosis centre within our grasp


PΡdraig Burns

CYSTIC Fibrosis has been in the news lately, but what exactly is it? Well, it is Ireland's most common life-threatening genetically inherited disease – and with 1,200-plus Cystic Fibrosis (CF) patients, Ireland has the highest proportion of CF people in the world.
CF affects the glands, damaging many organs including the lungs, the pancreas, the digestive tract and the reproductive system. The result is that people with CF are prone to constant chest infections and malnutrition. 
In the last number of months, Cystic Fibrosis has received a lot of attention in the media, most notably on the Liveline programme on RTE Radio 1. It centred on the delay in building the Adult CF Unit at St Vincent’s Hospital in Dublin. Thankfully, that campaign appears to have worked, with the contract having been signed for work to commence. It also focused attention on the level of CF facilities throughout the country.
Here in Mayo, people with Cystic Fibrosis are working towards having their own specialised unit built at Mayo General Hospital. Planning permission has been granted and tenders are currently being sought. The project will cost in the region of €1,000,000. The vast bulk of the money is being raised through voluntary donations by the public via fundraising ventures by the Mayo CF branch.
It is reasonable to ask why there is a need for a specialised CF centre for Mayo. The answer is fairly straightforward. At the moment, people with CF who need hospitalisation (and it happens frequently enough), must present themselves at the paediatric ward at Mayo General Hospital. The facilities there are adequate (as against the care, which is superb), but adequate is not sufficient when it comes to caring for CF.
Having to spend time on a paediatric ward is fine when the patient is a child/teenager. But for young adults, spending time on a paediatric ward, no matter how fantastic the staff there are (and they are absolutely wonderful) is far from ideal. As time moves on and more and more people with CF live longer lives, they should not have to spend whatever time they have to in hospital on a paediatric ward. It doesn’t happen to anyone else living with a life-threatening condition, so why should it be the case for people with Cystic Fibrosis? Moving to an adult ward is not an option, as the expertise in CF care is based on the paeds ward.
People living with Cystic Fibrosis are also notoriously prone to cross-infections, and they need to spend their time in hospital in en-suite isolation rooms. Currently, the paeds ward can take care of two, maybe three, people with CF who require simultaneous admission, but thereafter, there can be problems.
The new unit, when completed, will be equipped to the highest standard with the most up-to-date, specialised equipment, something that is simply not possible on such a multi-disciplinary ward such as the paediatric ward. The technical people describe the planned facility as a ‘future build’; a nice way, I suppose, of saying that the unit will be kitted out with the future in mind.
Those of us involved in the project to build this unit are deeply appreciative of the kindness and generosity of so many people who have helped us in the last couple of years. We are now entering the final phase and we hope to have work started and completed within the next 20 months.
The gesture by The Mayo News in nominating us as their charity partner for this year’s Club Stars is quite simply, superb. Not alone will people with CF benefit from the funds being raised, but, equally importantly, it will provide us with a public platform to create an awareness of what it’s like living in Mayo for those with Cystic Fibrosis and their families. Over the next few weeks, we hope to give you that insight.

PΡdraig Burns is a parent of children with Cystic Fibrosis. He and his family live in Westport.

The proceeds of Mayo News O’NeilLs Club Stars 2010 are going to the Mayo Branch of The Cystic Fibrosis Association Ireland

CF Facts

• There is 1 in 4 chance of the baby being born with CF when both parents carry the CF gene
• Approximately 1 in 19 people carry the CF gene
• There is over 1,110 CF patients in Ireland
• Ireland has the highest proportion of CF people in the world
• CF is Ireland’s most common life-threatening genetically inherited disease
• Each year, around 30-40 children with CF are born in Ireland
• Patients relying on the Irish health system may die ten years earlier than their counterparts in Britain and the US

Source: The Cystic Fibrosis Association of Ireland, The Irish Times, irishhealth.com