While there have been major improvements in the care of people with cystic fibrosis (CF) in Ireland, there is still a lot more to do to ensure that those affected ‘experience world-class health services to enable them to live their best lives possible', Cystic Fibrosis Ireland (CFI) has said.
The charity made its comments ahead of its annual conference, which takes place in Carlow next month. It will focus on the progress that has been made in CF care over the last decade, as well as the challenges that lie ahead.
CF is Ireland's most common life-threatening inherited disease. Around one in 19 people are carriers of the CF gene and when two carriers have a child there is a one in four chance their child will be born with it. There are around 1,300 people in Ireland with CF and this country has the highest prevalence and the most severe types of CF in the world.
The condition affects the regulation of absorption and secretion of salt and water in various parts of the body including the lungs, sweat glands and pancreas. This defect inhibits the flow of salt and water through the body's cells, causing a build-up of thick, sticky mucus, which can clog airways and harbour harmful bacteria.
Symptoms can vary in severity. The most common symptom is recurrent chest infections, which results in lung damage.
Speaking ahead of the conference, CFI chief executive, Philip Watt, said that there has been ‘tremedous progress' in the care of people with CF over the last decade, including the new CF unit at St Vincent's University Hospital in Dublin and the approval of new drug therapies, such as Orkambi and Kalydeco.
"As a result, people with CF are living fuller and longer lives than ever before and so we now need to build on this momentum. We welcome recent commitments from Government to shortly bring legislation before Cabinet for soft opt-out organ donation and we very much look forward to seeing that.
"We are also conscious that infertility is an issue that affects a high proportion of the CF community and so we would urge the Government to fulfil its promise to provide funding for IVF treatment to support those wishing to start a family," Mr Watt commented.
Registration is now open for the annual conference, which will include guest speakers talking about issues such as the challenges faced by parents of newly diagnosed children and the latest CF treatments, including new drug therapies in the pipeline.
The conference will take place on Saturday, March 30, at the Mount Wolseley Hotel in Carlow and anyone interested in attending can register here.
"The conference will also be streamed online at www.cfireland.ie so that people with CF can watch proceedings from the comfort of their own homes. I would encourage everyone to interact as much as possible with the speakers, and help to forge a future for people with CF that we can all be proud of," Mr Watt added.
For more information on CFI, click here.
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