Crosshaven’s Laragh Fitzgerald Discusses Her Cystic Fibrosis
With the recent discussion on whether the government should fund ‘orkambi’, a life saving drug for Cystic Fibrosis sufferers, Crosshaven woman Laragh Fitzgerald has written this piece for The Carrigdhoun explaining what life is like managing Cystic Fibrosis.
Growing up, I believe no one would have thought I was any different from any other local. I attended Colaiste Muire secondary school, where I played on the school basketball and soccer teams, as well as playing for my local Crosshaven AFC, rowing and basketball club. Looking at me, you wouldn’t have thought I was any different from any other player or student, however my daily routine is a little different to everyone else.
Every morning I’m woken gasping for air. This is due to the mucus that builds up in my lungs overnight. In order to clear this mucus, I have to complete my chest physio, which can take up to 40 minutes, followed by a number of inhalers and tablets. I must repeat this in the afternoon and evening as well as taking up to 30 tablets a day, if I want any means of functioning and breathing throughout the day. This is the daily routine for most suffers of Cystic Fibrosis.
Although this is tiring and sometimes tough, growing up in Crosshaven I had the same goals as most of my peers, which was to travel and graduate college. I never saw my condition as a means of stopping me reaching those goals. That was, until CF began to take its toll as I got older.
I found I could no longer play the sports I wanted for my local teams, as it became just too hard to breathe. These days I’m admitted in to hospital more times than I would like to say, due to continuous chest infections and the inability to breathe properly on my own. Cystic Fibrosis is a genetic disease that attacks the digestive system and slowly shuts down the lungs. There is no cure. This article is not a sympathy act, but instead is a way of looking for help with something that is much bigger than myself.
Last Thursday, there was a debate in the Dail on whether the government should fund the drug ‘Orkambi’ supplied by the pharmaceutical company Vertex. This drug is ground breaking for the CF community as it is the first drug that attacks the cause of CF. With this, it reduces hospital admissions, strengthens the lungs and in turn increases the life expectancy of those living with Cystic Fibrosis, which at the moment is at 38 in Ireland. Ireland has the highest rate of people suffering from Cystic Fibrosis, with the lowest life expectancy. This has to change.
The drug ‘Orkambi’ was approved last year in July by the American Food and Drug Administration as well as the European Union. This drug will cater to 60% of CF patients in Ireland with the Double Delta F508 gene, which is the most common form of CF in Ireland. Cystic Fibrosis is a silent killer because when you look at a sufferer, they would not look sick and I bet even if you asked them, they would say they were fine. Even though with CF, because of the mucus in your lungs, it feels as though you are literally drowning inside your own body, gasping for air.
I’m a member of the small local community of Crosshaven, but also a member of a much bigger community of Cystic Fibrosis patients who are tired of pretending that they are fine. ‘Orkambi’ is the closest thing to a cure for CF and the government are refusing to pay for the life-saving drug, due to the price Vertex is demanding, but surely an agreement between the two is essential? As it will literally save hundreds of lives in Ireland.