"I would say to anyone thinking about joining a study – do it"
Being diagnosed at 44
I was diagnosed with CF at the age of 44, after having had dodgy lungs for most of my adult life and being diagnosed with asthma in my early 20s. In 2009, I had a chest infection that wouldn't clear up, and eventually I was referred for a CT scan and admitted to the bronchiectasis clinic. They found one CF gene in December 2009 and then after a few months discovered the other mutation in May 2010. It all made a lot of sense to me, although it was a lot to take in.
How CF has affected my work and health
CF has had a big impact on my career. The burden of treatments and my continuing health issues meant I was no longer able to return to my job when I felt well enough to return to work after a long absence around the time of diagnosis. The department I worked in wouldn't make adjustments for me to work fewer hours. This was before the Equality Act had been passed. I was moved to a less suitable role, which was a big step down. Eventually I found a better department to work in, but since my 30s I never had energy to work more than three days a week. I have found trying to find a job that fits my circumstances very difficult.
Since my 30s I never had energy to work more than three days a week. I have found trying to find a job that fits my circumstances very difficult.
Health-wise things have been up and down since 2010, as for most of us with CF. At the moment, I am generally in good health and have responded well to Kaftrio, which I started in 2024. I still take a lot of tablets and daily inhaled therapy (Pulmozyme), as well as doing regular physio.
Why I wanted to get involved in research
I was interested to hear from the CTAP trial coordinator at my CF centre about a study for people with bronchiectasis. It was looking at a new treatment being developed to help reduce inflammation in people with bronchiectasis.
When I heard about the trial, I had already decided to take early retirement from my job (15 years post-diagnosis), so I knew that I would be able to give the time required. I also wanted to contribute to the medical community and help others living with bronchiectasis – both with and without CF.
What the screening process was like
I think I was the first patient to be screened, so there were some teething issues. I had two screening visits. The first screening visit was a very long day with lots of forms to fill in and lots of bloods taken. I found it very tiring because I wasn’t prepared and there wasn’t time for a break. Nowadays I come more prepared with my lunch and ask for a break if I need it.
I experienced a bad exacerbation between screening visits. When I went in for my second screening visit it wasn’t clear whether I would still be eligible for the study or if I’d have to start all over again. We were all quite stressed, but then it was resolved and we were told we could continue.
My experience of taking part
My experience of the study itself has been that the early stages can be a bit full on, but everything calms down very quickly. The study I’m part of is quite long (lasting over 18 months), but the burden of time reduces as time goes on. After a very busy initial period, I now only go to hospital once every three months. I have quick catch-ups over the phone in between these visits.
After a very busy initial period, I now only go to hospital once every three months.
I would say to anyone thinking about joining a study, please go ahead and do it. I have found taking part in the study really rewarding. I didn't expect to see one of the CF doctors at all of my visits. On each of my visits, I have had an ‘old-fashioned’ medical examination, including a reflex hammer – apparently they are scarce in the hospital! The whole team is lovely and it's always a pleasure to be working with them.
There are lots of different types of CF research studies and what’s involved in taking part can vary a lot. We currently have 15 studies on our Trials Tracker that are open or opening soon, looking at everything from new enzyme replacement therapies to CF-specific weight loss programs.
Find CF studies to take part in
You can also help shape CF research by sharing your thoughts and experiences of CF. Find out more about how our Involvement Group supports research.