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I was born with CF and now I research it
My CF journey
I’m Bethinn, I’m a 26-year-old PhD student and I’m currently working on the COS-CF project. I was diagnosed with CF at 4-months-old. CF wasn’t part of the heel prick test at that time, so I was diagnosed having had the classic early symptoms of failure to gain weight, distended stomach and oily stools.
I stayed pretty healthy through my childhood, but in my teens I started to be hospitalised more regularly, to the point of needing intravenous antibiotics (IVs) every three months. I developed NTM (non-tuberculosis mycobacterium) in 2017 while studying for my A-levels and underwent eradication for that in hospital. I then started university, but unfortunately I become progressively more unwell and was uncertain about what my future would look like.
Around that time, I was given the opportunity to take Kaftrio which completely altered the course of my life and enabled me to really consider what I wanted to do with my future and my career long-term. The only real thing I was ever interested in was medicine and healthcare. I was always so inspired by the people who cared for me and I wanted to do something similar. That led me to a master's in public health, and then the opportunity to work in CF research.
Living and researching CF
People often ask me what it's like to be a researcher with CF in the field of CF. Family and friends will say, ‘wow, it must be so amazing and you must just feel so passionate about it’. I do and it's truly a privilege to be in this position, but it also feels quite bizarre. I spent my whole life as a patient; I was used to that dynamic between me and my healthcare team and I looked up to them. Now we're sitting in the same room at a CF conference and it feels surreal. But I'm trying to remember that as someone with CF, I have a unique perspective to offer which is of just as much value.
I'm currently working on a project called COS-CF that stands for Core Outcome Set for CF. The idea is that we want to find a small number of outcome measures that should be used in all CF trials, no matter what the trial's focus. If everyone is measuring the same outcomes in the same way, it'll be much easier to compare and combine studies and to maximise the benefit of every single trial. CF is a relatively rare condition which means it's even more important to make the most of the benefits of every study. We hope that by improving the quality of every research study, it will make it easier to identify the best treatments for people with CF in the future.
My advice for people with CF wanting to get into research
There are so many different avenues into research, you might not need all the formal qualifications you would expect. Speak to the right people and don’t underestimate the power of networking. I was a patient advisor in various research opportunities and through that I met the right people and was able to get into my PhD programme.
The support of Cystic Fibrosis Trust
Cystic Fibrosis Trust has supported me immensely throughout my lifetime. It’s been a huge source of information from a young age, which I’ve found incredibly useful. Without the Trust, we wouldn’t have made incredible research discoveries, which have made a difference to so many.
I've also benefited from grants from the Trust, including a Health and Wellbeing grant that I was able to use when I was quite unwell to buy a paddle board. It was really fantastic because it was a very accessible form of activity that I could do.
My hope for the future is that we can develop highly effective treatments for absolutely everyone, including those with genotypes that can't currently benefit from the modulators. It’s the ultimate goal and an essential priority.
Find out more about COS-CF and how you can get involved by following the project on Instagram at cos_cf_research.
Get inspired by other women working in science in our Inside the Lab series
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