“I think my biggest piece of advice is talking about CF, but also realising that you can do more than you might think” – Isobel, 23.

Diagnosis

I was diagnosed at birth. I have no awareness of the diagnosis, but no one in my family was aware of CF because no one has it. My grandparents, great grandparents, my brother, no one! So it was just me and it was very out of the blue and unexpected. When I got it, the diagnosis had an impact on my life because of all the medications and the nebulisers and hospital appointments. I was also admitted a few times. I had to eat more food, because I lose weight really quickly, but also stay fit, stay healthy and have a normal childhood. But then again, I’ve still been able to do everything that any of my friends and my brother have been able to do.

Growing up with CF

I think growing up was ok. I was able to do PE lessons, I was able to sail. I only missed school if it was down to a hospital appointment, or if I was admitted, which has only happened around five times throughout my life - I’ve been quite lucky.

Kaftrio

I started Kaftrio in 2021 and since being on that, my life has changed for the better. It’s been absolutely incredible. I took it one day in the evening and by the next day I could breathe differently. I wasn’t coughing and my family began to notice. I didn’t have to take my nebulisers anymore unless I got ill, but I haven’t been ill. I also haven’t had to have any extra antibiotics, just my usual ones. I’ve been able to cut down on some medication and that was amazing. I don’t think I would have been able to run the half marathon if it wasn’t for Kaftrio, and even if I was able to run, it would’ve been a lot harder.

Running the Cardiff Half Marathon

It was incredible because I wanted to run it for my myself. I wanted to show a positive story and create a positive impact. I didn’t talk about my CF before this, only my family and close friends knew about it and I don’t know why I didn’t because it is me! I should be proud of it and share my CF, and I thought running the half marathon would be a good time to do that. Why should I hide it?

I don’t like reading all the negative stuff, I like to hear about the positive side, the happy side. But when you Google ‘cystic fibrosis’ or when you see it on the news, its always more or less the bad side of it, and I don't like that and I don't want anyone else in my position to just find the bad stories. Yeah, the bad happens, but there's so much I've been able to do and I want other people to be able to do it. So I think running the half marathon was a yes for me to prove to myself I could do it, to also make me fitter, but also to share my story and to show other young people that even if you have cystic fibrosis, you can still do anything. And that was the big push that I needed.

An invisible condition 

I think the biggest thing is people always say that it's not obvious that I've got cystic fibrosis, and I love that, but then it’s an awful amount of medication. One part of me is like, it's only medication, its easy, but then I also know that it’s draining and every time you eat, you’ve got to think, ”have you got your tablets? Have you taken enough tablets? Have I got enough to stay out longer?” I mean, it is just medication, but if I didn't take the medication, I know the effects. And it isn’t just one or two tablets, its around 30 tablets a day, and if I didn't take those tablets or enough of them, then I am ill. I also lose weight really quickly, so it’s like I have to eat enough, but then I also have to exercise. You want to stay fit and healthy, but not too fit and healthy that you lose too much weight. So it’s just trying to balance everything.

Impact on mental health

My mental health has definitely been affected by CF, and I think it was mostly around when I was in school, especially like secondary school, because you meet so many people and I was admitted to hospital a couple of times. One time it was 10 days that I spent in hospital on drips. So you begin to notice that you’re different to the other kids. I used to cough all the time as well, I could never knock it off, and during exams like GCSE’s people would say, “you always cough!” and well, there was nothing I could do about it.

I think also what's massively affected my mental health is finding out more about cystic fibrosis. As in, stuff that I don’t necessarily want to find out. It’s sparked questions and I have spoken to my psychologist and it's not always good. Even now, I'm 23, and I still have stuff I want to know. But then it's like, do I actually want to know? Because it does scare the living daylights out of me. Part of me is like I want to know, but I think it’s just like a battle. Sometimes I come across stuff involuntarily, like I’ll be scrolling on TikTok and something will come up that I don’t want to see, but I can’t not see it!

Advice 

I think my biggest advice is to speak up. I went through a phase of having a lot of questions, and I spoke to the hospital and in one of my appointments we arranged to sit down with a doctor to talk through everything. Then I went home and shared what I had learnt with my parents. My parents are very much involved with my health and I think speaking to my parents about my worries helps too. So I think my biggest piece of advice is talking about CF, but also realising that you can do more than you might think. That's why I did the half marathon - to prove to myself I can do it and it's been just over a month and I'm still thriving off of it.

Past research, funded by our incredible supporters, has transformed the lives for many in our community. We’ve made some incredible progress. But we still have so much to do.

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