“CF diabetes can feel like a rollercoaster”: Annabelle’s story

My CF diagnosis

I was diagnosed with cystic fibrosis at 12 months old. My whole family caught the seasonal flu in the winter, and I just didn’t get over it. My mum took me to see multiple doctors’ and they dismissed her as a first time mum just worrying about everything. Eventually she was told to go to hospital, they did a sweat test, and I was diagnosed with CF. It was a big shock for everyone and a big learning curve as my family didn’t know anything about CF. 

I was fairly healthy throughout my early childhood, but at around 14 years old I moved school and tested positive for Pseudomonas aeruginosa and couldn’t shift it. I’ve been on IVs around every two years since then. I remember having lots of arguments with my parents as a child about doing my physio but am so grateful now that they persevered and made me do it! 

Having a baby

Before Kaftrio, I wasn’t sure about having kids at all because I didn’t know how my health would cope and I didn’t want to leave the baby if my health declined. I then met my partner five years ago and came round to the idea, but initially thought about adopting. 

Then when I felt the difference Kaftrio has made to me, I got more hope for the future and having a child became an option. My parents never thought they would be grandparents. They were so emotional when I told them, and my daughter is so wanted and will be so spoilt.

Living with CF diabetes

I got diagnosed with CF diabetes (CFD) when I was 11 years old. I’d describe it as like constantly being on a rollercoaster. It’s juggling what I eat with how much insulin I’m giving myself – sometimes it feels like half mental maths and half guesswork! Sometimes the rollercoaster is going up and you end up going really high and that makes you feel ill. Sometimes it goes really low and that makes you feel ill. And then sometimes you're straight in the middle, which is great, but that doesn't happen all the time. 

The difficulty with CFD is the unpredictability of it. It's treated like type 1 diabetes, but because of the mechanisms that underlie it, I could eat the exact same thing one day and have an amount of insulin, and I'd be fine. And then I can eat the exact same thing another day and have the same amount of insulin and be off, because sometimes our bodies do release insulin and sometimes they don't. 

Growing up, I was very needle-phobic. I’d need gas and air and my dad would have to sit on top of me to stop me running away. I hated it so much. Luckily, I’m on an insulin pump now and not doing manual injections anymore. I really don’t like needles, and it could be seven to nine needles every day and now it’s just one needle every three days.

Being pregnant has impacted my CF diabetes in some ways, especially as the pregnancy has gone on. As the baby grows bigger, the baby starts taking in the insulin that I’m using from my pump and that means I’m going to start needing more insulin and what I had been previously taking isn’t quite cutting it anymore. The diabetes midwives did tell me that once I am in the third trimester I’ll be needing three to four times the amount of insulin, as I’m supporting myself and the baby now. 

My advice for others

The first seven years of my diagnosis, I often ignored my diabetes and didn’t take my insulin as I should and I had complications because of it. It felt like just another thing that was separating me from my peers and making me feel different on top of my CF. So if I had one piece of advice for somebody who is newly diagnosed, I would say it’s not going away, and I wish I’d realised that as a youngster and made more of an effort to get used to it and get on top of it quicker. Because now my insulin requirements are quite a lot, and it’s got worse and worse over the years. I wish growing up there had been more education around diabetes and the mechanisms around it, so I could really understand what was happening in my body. 

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Everybody's experience of CF diabetes is different. Please speak to your CF team if you have any concerns.