Cystic fibrosis (CF) is an inherited chronic disease that primarily affects the lungs and digestive system of about 1,200 children and adults in Ireland.
A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
CF is most common among people of Northern European ancestry and affects about one out of every 3,000 newborns. The expected life expectancy is between 42 and 50 years in developed countries with access to medical equipment and medicines.
Living with cystic fibrosis is not only an added weight on your shoulders but also makes daily life a lot more challenging. I had a one on one chat with someone who lives with the condition to tell us more about what life is like with CF.
What is daily life like with cystic fibrosis?
It’s more complicated than other people’s normal routines and there’s a lot more involved in my day than meets the eye, a lot more to consider.
How much more stress is added to your day?
Well I have to get up earlier than I would if I didn’t have cystic fibrosis and stuff like physio can set you up for a good day or bad day chest wise. I don’t have spontaneous days as much because I have to pre-plan things like have I my tablets for the day? Is my chest clear enough? Am I feeling good?
How does it affect your social life?
It can negatively impact my social life. This week for example, I’m not feeling the best so I might not be able to go to a ball in college which everyone is excited for and I might not be able to go to my friends 21st party. It’s bad because I can’t plan in advance. I have to really take it day by day because on Monday I could be fine and on Tuesday I could be really sick. I’m not as spontaneous as I would like to be, but if I am in good health I just have to be confident I can get through the night without feeling ill.
Do you have to tailor your diet in any way?
In general, the diet of someone with cystic fibrosis is high protein and high fat because due to the insufficient function of the pancreas, fats and vitamins and the nutrients in food aren’t absorbed as much as a normal person so some people with cystic fibrosis can find it hard to put on and maintain their weight.
They tell you as a kid to pretty much eat as much as you can. They don’t really place an emphasis on healthy eating which I don’t like because I think you can have a healthy diet and also include what you need to maintain your weight. There can be problems due to the high fat aspect with blood sugar and diabetes, but diet you just have to be a lot more mindful of it and try your best to work with it.
Was having cystic fibrosis something you considered when choosing a course in college and do you think it will affect future job opportunities?
It went through my mind obviously because it always has to when planning my future. I think because of the person I am, I’m a determined, hard working person, so cystic fibrosis is a part of me but it’s not what dictates my life because I don’t allow it to. In relation to hours and things I just decided I’d take it as it comes because that’s just the best way to look at things and I try meet the challenges that would come with any course.
I would like to think it won’t affect my job opportunities but that would be in an ideal world. I think it will affect how I pursue getting a job and what hours I can do when considering I might have to take some time off if I get quite ill or maybe I’ll lose a job because I’m ill. So it is a worry and it is a constant worry how I’ll cope being in a professional environment but as I said before you just have to take things as they come.
Has it gotten any easier over the years to live with?
I spent a lot of my childhood in and out of hospital; it frames a big part of my childhood memories. It’s definitely not easier because I’m older, if anything it’s harder. When I was a child I didn’t know any different whereas now as an adult that knows this is a condition that hinders me, I feel a lack of control when I should feel control. It’s harder because I have things like an academic life, a social life, a romantic life to tend to so being in hospital is much more of a hindrance when I want to get on in my life.
If you know anyone that has cystic fibrosis, now you can better understand the challenges that they face in everyday life. Some things are out of their control and all they can do is learn to live with it.
Do you have cystic fibrosis, maybe you can relate to how this person feels and what they go through. If you do, we’d love to hear more about your story so let us know about it in the comments section down below.