THIS week is Cystic Fibrosis Awareness Week. It will provide a perfect opportunity to create an awareness of Ireland’s most common life-threatening, genetically inherited disease. Statistics show that one in every 20 people carry the defective gene.
Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and to digest food. Bacteria can grow and colonise in the lungs leading to damage and eventually failure.
There is no cure for Cystic Fibrosis. As a parent of a three-year-old boy with the condition the harsh reality of the disease is frightening and very, very sad.
Approximately 43 years ago, the life expectancy of the Cystic Fibrosis sufferer was less than ten years. Today, America boasts of having almost quadrupled that figure, while England has trebled it.
However, here in Ireland, the situation is radically different. The reality here is that, despite the advances throughout the rest of the world, we have only managed to double it, with the life expectancy being a mere 21.5 years of age.
To this parent, it is abundantly clear that, because we have the highest rate of Cystic Fibrosis sufferers in the world, along with the lowest life expectancy, there is a huge need for more awareness of the condition and of the system that is ultimately failing those who suffer from CF.
Firstly, we need to create an awareness that our Health Service is not as it should be. Sadly, Ireland falls well below the internationally-accepted norm. In our country, people with Cystic Fibrosis rely heavily on a health system that is inadequately staffed and resourced.
A major problem for Cystic Fibrosis sufferers is that there are not enough beds in isolation units. In some hospitals, it is common practice for adult patients to be treated in the paediatric ward because there are no dedicated Cystic Fibrosis facilities in the hospital.For a parent of a CF child, the fear is often not of the hospitalisation itself (that is accepted as the norm), but of what they could contract while in hospital.
According to the Cystic Fibrosis Association of Ireland, the staffing levels for people with the disease are more than 400% below minimum accepted standards. That is an incredible statistic and it’s an absolute indictment of a health system that has allowed the care for CF patients drop to unacceptable standards. To say that there is a need for an improvement in facilities is one of the great understatements of our time.
For many people with Cystic Fibrosis, the harsh reality of their condition is that as their disease progresses they may well find the need for a lung transplant. It does not apply to everyone but a significant number of sufferers will depend on transplants to keep them alive as they get older.
Many sufferers die while waiting for this lifeline operation. Yet, there is no legislation covering the issue of organ donation. A person can be carrying an organ donor card but it does not automatically mean their organs can be donated. The next of kin would decide if the organs could be donated. This has very serious implications for sufferers of Cystic Fibrosis.
The Pollock report, which was commissioned by the Cystic Fibrosis Association of Ireland and published in 2005, highlighted the need for a review of our existing services. People with the condition are in urgent need of the proper services now, not at some future date, because by then it will be too late for some of those who suffer every day of their life. Why, at a time when we are constantly being told that this country is awash with money, is it taking so long to put the most essential facilities in place to keep our young people alive? How many more families will have to grieve their lost ones before this country provides people with Cystic Fibrosis the same quality of care that exists throughout Europe and the rest of the world?
Louise Harty lives in Castlebar and her three-year-old son has Cystic Fibrosis