Currently there are approximately 1,000 people in Ireland living with cystic fibrosis, prompting Cystic Fibrosis Ireland to launch their One in 1,000 appeal.
The organisation has set a target for the recruitment of 1,000 women to take part in the Flora Women’s Mini Marathon on Monday June 2.
This will help raise thousands of euro for services for people with cystic fibrosis including support, grant assistance, research and the funding of important hospital facilities.
We spoke to Bevin Kate Murphy, a second year student of Health and Society at DCU, to find out more about cystic fibrosis.
Can you tell me about cystic fibrosis in your own words?
At the moment, I’d actually consider myself healthy. Especially because going back a couple of years, I could be in hospital on a monthly basis, even every two to three weeks, and I haven’t been in hospital for seven months now. I feel much healthier and stronger. Of course, it does affect me.
It takes two and a half hours in the morning and two and a half in the evening for me to sort my medication. Exercise is very important too, so you could pretty much say that my day pretty much revolves around staying healthy.
What does your exercise routine involve?
I often go for a walk or a jog. I also take classes, like TRX and Kettlebells. To me, I definitely think that’s what helped to keep me out of hospital for so long. It started off at two months, then four months, and now it’s seven months since I’ve been in hospital. So, I’m getting a longer break each time. I’m 19, going on 20 now. It’s only in the last year that I’ve started to exercise. In 5th year/6th year at school, I was in hospital every month. I was at that age when I thought I knew best and thought there wasn’t any point in exercising as it wouldn’t make any difference.
Then I was really sick and missed lots of school, and probably missed half the year because I was in hospital at least once a month. I also missed a lot of college in first year, there are 12 weeks in a semester and I missed six weeks. I also missed Christmas and summer exams and catching up was a nightmare. I had to repeat and my whole summer was taken up for doing stuff for college so I didn’t really get a proper break.
Is there an understanding of your condition?
When I was growing up, I didn’t really tell people. When I was in hospital and people would ask me why, I used to say I had pneumonia or a chest infection. Now, I don’t really have any problem telling people. I do a lot of fundraising for cystic fibrosis and I broadcast it all over Facebook. It’s not something I hide and I don’t worry about telling people about it.
What struggles have you encountered?
My family and my close friends understand. There are times when I wonder if people do get it, I could be fine one day, in flying form and the next I could wake up and just feel miserable. People might not understand how it can change so quickly. I could go for a jog and then feel horrible later and struggle to walk up the stairs.
I could then sleep all day and I wouldn’t have any energy. Things deteriorate so quickly and I sometimes wonder if people understand that, especially if I say I can’t go out because I’m sick and if people actually understand why.
Bevin has cystic fibrosis but is in good health at the moment
Is there widespread awareness of the condition?
I think so but there are times when people comment and say things like, “Oh you should get something for that cough.” In those cases, I just nod and say yeah. I don’t see the point in telling them about cystic fibrosis when I don’t know them. When I first met my boyfriend, he didn’t know much about it.
Then, he would ask lots of questions about it but after being with me for two years, he knows all about it and has watched me improve and my health get better.
Sometimes, people might make comments when they don’t understand, “oh, you wouldn’t be able for that etc” but it’s just that they don’t see that every case is different.
Would you agree that there are varying levels of this condition?
Yes. When I was younger and in the children’s hospital in Crumlin, I knew people who died at the age 16 or 17. I used to think that would happen to me. When I was in hospital every three weeks, I was very sick. I couldn’t walk ten minutes without collapsing and I never thought I would improve to the level that I can now take fitness classes.
I started at the bottom, walking for ten minutes at a time. It just happens though, by taking one step at a time and you don’t even realise how much you’re progressing.
CF do have an exercise grant but it’s limited, you have to apply early and you mightn’t even get it. Cystic Fibrosis sufferers can’t exercise when it’s damp, only when the weather is good. So if you’re at work all day and you don’t have gym membership or the necessary equipment at home, as a CF sufferer you can’t exercise when the weather is bad as it affects your lungs.
What are facilities in Ireland like?
Hospital beds are always a problem. I’ve only been in Vincent’s Hospital since November 2012. I was lucky to get a bed straight away on the CF ward. In my opinion, there’s no point in being there unless you’re getting the care and I’ve been lucky enough that it’s only happened me once or twice, when I’ve been waiting on a bed.
There are people who need to stay there indefinitely and that is really difficult when they need to be there for the necessary care. They could be on IVs and are in for a month, at home for a week, and then back in again for a month etc. It’s people like that, who I’ve met along the way, that I really feel sorry for.
It’s not even just beds, it’s not having enough staff. Nurses are under so much pressure to see all of their patients and they don’t always have time to have a chat. Sometimes, that’s what you need. You want to be able to see people and not sit looking at four walls all day.
Tell me about the fundraising activities you have organised.
In November, I held a charity event in my local GAA club. It was a questions and answers night. The Dublin football team, who won the all-Ireland last year, were involved, the manager and a few of the players came along. It raised over €3000 so it was a great success. I did the Mini Marathon last year too and raised over €1000 for that.
Do you have a good support network that you can rely on?
Everyone’s so good, if I’m in hospital, they come in to see me. My Mam would come in after work and stay until ten o’clock and the next night my Dad would do the same. I’ve an older brother who’s very good to me, if I’m at home and am waiting for a hospital bed, he‘s like a nurse to me. So in that sense, I’m very lucky.
People can find out more about the One in 1,000 appeal by visiting www.cfireland.ie or calling LoCall 1890 311 211.
