“I think if I’d known someone with CF who had gone through pregnancy before and was able reassure me, I would’ve felt a lot calmer.” Bryony’s story

Can you tell us about your CF diagnosis and your health growing up?

I was diagnosed with CF when I was six-years-old, so quite late in comparison to most. Other than being in an incubator when I was born, my chest was relatively healthy, and I only struggled with digestive issues, which is why it took me so long to get a diagnosis. I was losing weight fast, and used to cry every time I ate anything, but the doctors kept suggesting it was an allergy to dairy, until I eventually got my diagnosis. I don’t remember the process well as I was still very young, but I do recall having more energy after I started treatment.

Growing up, my parents shielded me from CF a lot and tried to instil me with confidence and resilience, so getting the diagnosis didn’t really affect me much until I was older. I had my first major hospital admission at the age of twelve, and I started asking myself questions like ‘why is this happening to me?’ and feeling different, but my parents always taught me that being different was a good thing, which helped me come to terms with it. I’m really grateful to have had such positive role models. Even though I often felt different to my peers with having time off school or having to shield from the sun when on certain antibiotics, I never resented being different. As a child I always saw CF as something that makes me who I am. Playing a brass instrument growing up also helped with my physio, which was a fun way to manage my lung function.

What was it like as you grew older? Did your health change?

It got to a point where I was coughing every single day, and had to carry around a lovely water bottle for me to spit phlegm into. I used to struggle just walking, especially up and down stairs, because of breathlessness and had to constantly eat to keep my weight up. Everyone used to think eating fatty foods was fun but when you’re having to do it all the time, it’s really not that fun. I had a massive breakdown about it all when I went to university, as I was having to deal with ordering prescriptions and spending time on my treatments for the first time by myself and it felt like such a huge responsibility. You become a lot more aware of it all as an adult. I remember one time in 2019, my lung function was around 25% because I had two infections and hadn’t being doing my treatment properly and ended up in hospital. It just shows the weight of responsibility of having the motivation to keep yourself well, on top of everything else that comes with being an independent adult.

When did you start Kaftrio and how did your health change when you started the treatment?

I started taking Symkevi in 2020 and then Kaftrio in 2021, so it’s been about 2 years. I saw a change within a day, having the initial ‘purge’ of phlegm at first, and then my cough just stopped, and it hasn’t come back. It was absolutely bizarre, it felt like I didn’t really have CF anymore. I’ve had the most incredible experience with it, and I have so much empathy for those who can’t benefit from it.

Did Kaftrio change your plans to start a family?

100%. I think I was getting to the point with my lung function where I probably wouldn’t have been able to have kids. Growing up and being told of your lower life expectancy and not knowing if you’re even fertile, you sort of always think that you can’t have a family because you’re going to die at a young age anyway. Going from that to having Kaftrio and getting pregnant with no issues - it’s just so hard to wrap your head around. I definitely didn’t grow up thinking I wanted kids. I think the belief that I wouldn’t be able to made me subconsciously think I didn’t want them anyway. Starting Kaftrio allowed me to question it as an option, especially after bringing up my partner’s kids and realising I had a maternal side to me all along.

What was it like being pregnant and giving birth as someone with CF?

I had a really positive experience, but it was scary as I was told I was ‘high risk’ throughout and needed 24/7 contact withmy CF team. Luckily, my pregnancy went without complications. I was worried about whether my lungs would be able to cope with the birth and whether they would be badly affected by gas and air, but my lungs didn’t get tired at all and gas and air made no difference. I think if I’d known someone with CF who had gone through pregnancy before and was able reassure me, I would’ve felt a lot calmer. I would have made different decisions such as choosing to breastfeed, if I had another CFer to talk to about it rather than just accepting it wouldn't be the best option for my CF incase I got another chest infection.

Do you think you’ll be open about your CF with your baby as they grow up?

Yes I think so, I’ve been very open with my partner’s kids about it. They watch me do my nebulisers and ask me questions. They’ve been amazing about it, and I think it’s really good to educate kids at a young age. As they’ve got to the age where they learn about it in school. It means they’ve been able to re-educate their teacher and classmates on things they’ve got wrong and they love raising awareness about CF. I think with my son being around it all his life, there won’t be a need for a big conversation or anything because it will just be ingrained into daily life.

Has it been therapeutic to share your journey with others on social media?

Yes, because I wish I’d had more people to look up to when I was going through pregnancy with CF. There are so many influencers out there who are mothers, but it’s so difficult to find mothers with CF sharing their experiences. I would have loved to have had someone to talk to or a group of women who had gone through the same thing, because it was quite stressful at times being referred to  as ‘high risk’. I felt it was important to share my story so that other CF mothers can see that it is possible, see the highs and lows of my journey and have someone to reach out to if they need to.

Do you think having a baby has changed your goals for the future?

I’m a personal trainer, but I’ve now trained as a post-natal personal trainer as well, because I realised there isn’t a lot of support physically, or mentallyafter giving birth. If I can be there to offer that support to mothers, and CF mothers as well, that would be amazing. I did a hypnobirthing course and received so much support from the community I’ve also heard from CF mums who feel guilty for missing medication and feel like they can’t talk about it, and I want to provide an outlet for that sort of conversation, and to give mothers access to help and support. I want to create a website that provides an all-encompassing hub of everything mothers need, including workouts, tips on things like what food they can easily freeze, and mental health support with options to chat to other women. That’s something I wish I had when I went through pregnancy and birth. Having a baby has allowed me to find my niche within personal training, and I’m now able to do something I’m really passionate about.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,900 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

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