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Keeping one step ahead: Understanding growing older with CF
Growing older with CF is a new topic for everyone, from people with CF and their families, to CF teams and researchers. CF researcher Dr Freddy Frost from the University of Liverpool has recently published a research article exploring this topic. The article looks at what studies have already been done, and highlights areas we need to find out more about to make sure everyone with CF can look forwards to a future free from the limits of CF.
New treatments have transformed the outlook for many people living with CF, enabling them to enjoy more of what they love as they grow older. We must conduct collaborative and multidisciplinary research to make sure growing older doesn’t become a barrier to that freedom.
Dr Freddy Frost, University of Liverpool
Tuning in to existing health data
The data within our UK CF Registry shows us really important trends in the health of people with CF. As people with CF get older, researchers and doctors will need different information to predict and prevent trends in their health. A key question for CF researchers will be what information is collected into the UK CF Registry and how can we accurately and safely use healthcare information from other databases to find out more about growing older with CF.
Thinking more broadly about symptoms
Everyone was familiar with the signs and symptoms of CF before modulators became available. Now as people with CF are living longer lives, it is less clear whether symptoms people experience can be linked to CF or something else. It means we will need to think in different ways about the health of someone with CF. Doctors and researchers want to be able to strike a balance between double checking what the cause of a symptom might be and not adding in burdensome additional tests. More research is needed to understand what CF teams should be looking out for, and how we can work with other specialist medical teams to share expertise and knowledge.
Unravelling the biology
There is still a lot to understand about what happens to our bodies as we get older, and how to prevent and treat any conditions we develop. Having CF can affect how your body ages and may change the steps needed to prevent and treat conditions like heart disease and cancer. Going back to the lab to understand what’s happening inside the cells in different parts of the body as you grow older is an essential first step in helping people live a long and healthy life.
A tailored approach to CF care
We know that everyone with CF has a different experience of the condition. These different experiences will get more complicated as people with CF live longer. For example, whether you can benefit from modulators, and your age and overall health when you started modulators, may affect your experiences of growing older. It means that the way your CF is managed is likely to become more individual to you, and more research is needed to help CF teams know the best way to do this.
Dr Frost’s research article was published in the scientific journal European Respiratory Reviews, and its available open access for anyone to read.
Where you can find out more
One of our research goals is to enable people with CF to live longer, healthier lives. This includes understanding the physical and mental health challenges people with CF face as they grow older, and how best to treat and manage them.
Over the last 20 years we have seen increases in the number of adults living with CF. Numbers from UK CF Registry show that more than one in ten people with CF are now aged 40 or above, as advances in treatment increase life expectancy.
We will work to unlock the many unknowns about the future health challenges that people with CF and the teams that support them may face. From ways to adjust current care and treatment, to understanding and preventing the development of diseases of an older age such as cancer, cardiovascular disease and dementia.
Find out more about our research in this area
With more research, you can give the gift of more years, and more memories
Research is the difference between leading a life limited by CF, and leading a life you choose. From the big things, like starting a family, travelling the world or going to university. To the small things, like saying yes to a night out, taking up running, or simply meeting friends for coffee.
Regular donations are the bedrock of medical research. They provide certainty and stability, the confidence to plan ahead, the power to back the boldest ideas with the biggest potential.
When you commit long term, people living with CF can think long term.