Involving the CF community every step of the way: Debbie’s story

My family’s CF journey

I have three adult daughters and two of them have cystic fibrosis – but they’ve both had very different journeys. Issy has had more issues with her lungs and grew Pseudomonas at 18 months old. Growing up, she needed IVs probably twice a year and she was in hospital with non-tuberculous mycobacteria (NTM) around 2019. But she has always been very sporty and determined and has even run the London Marathon for the Trust. Issy is now on Kaftrio – having been on one of the modulator clinical trials back in 2015 – and it has made a big difference to her life. She does experience some gut issues but is generally doing well and now lives in Australia. 

My youngest daughter, Lucy, had very few chest infections growing up and has only needed IVs twice in her life, but she does have CF diabetes. She’s also experienced liver issues and in 2018 she was rushed to hospital with a vascular bleed which was a complication of CF-related liver disease. It was very shocking at the time, as nothing had come up before in any tests. She was listed for a liver transplant last year, so we remain hopeful a match will be found. She manages everything really well; she’s sensible, pragmatic, and has a big support network around her. 

CF is not just the lungs

It was Lucy’s experience of liver issues that was my motivation for becoming part of the Trust’s Involvement Group. I felt that there was a lack of research in this area, and the care we received didn’t always feel joined up between the CF team and the liver specialists. People with CF are having to constantly make sure the scan is booked, make sure the tests are done, and it’s a lot on their shoulders. Joined‑up care shouldn’t rely on the patient chasing every test and result, and I see my role as trying to bridge the gaps. 

CF is so complicated and involves many different organs – not just the lungs – so I feel it’s important we see cystic fibrosis through a wider lens and I wanted to use my experience to help make that happen. The modulators have been game-changing for many people with CF, but more needs to be done to look at how these treatments impact other organs, like the liver. This is starting to happen but I’m passionate about ensuring this research and conversations continue.

Through the group some amazing opportunities have come my way. I chaired a workshop about the liver at the Trust’s UK CF Conference last year, and I’m now a member of the Trust’s Research Grant Review Committee, which is a group of CF clinicians, researchers and people like me from the CF community who review applications for funding from the Trust and its partners. It’s a real privilege to be on it and see how the community are involved in the research that’s happening, every step of the way. 

I’m now at a stage of my life in which I can dedicate time to being part of the Involvement Group and I really want to use my own lived experience to help my daughters – and everyone with CF – to be able to live a life unlimited. 

Find out more about CF-related liver disease

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