“The positivity I have had throughout my life has helped me immensely in achieving my goals.” Alex’s story

I’m 22, and I currently work in the business sector, which I have done since leaving school at 16. 

Growing up with CF was difficult at times, primarily because of the way it affected my education. Missing weeks’ worth of teaching throughout the academic years due to the lengthy hospital admissions and regular appointments meant that I had to study much more rigorously to keep up with my peers, which isn’t easy when you also have a long treatment regimen and feel generally tired from the condition. 

I was also known as ‘the kid who coughed a lot’, which felt demoralising in classrooms because, on occasion, I had other children who moved away from me, thinking I had something contagious. I also faced struggles in certain subjects, such as PE, because I couldn’t participate in the lessons the same way as other pupils. This also excluded me from extracurricular activities. 

My CF diagnosis and life with CF

I was first diagnosed with CF at six weeks old from the heel prick test.

Ever since then, CF has been impacting my daily life in a variety of ways. The burden of treatment can be particularly challenging and, at times, demoralising. During periods of more intense treatment, such as for exacerbations, you tend to rely heavily on your medical team as well as the family and friends you have around you. 

You end up having to rely on them to assist you with basic everyday tasks such as washing and dressing, as you are sometimes unable to do this due to cannulas and PICC lines. The daily medication you take can increase or decrease depending on how well you currently are, but even if you are going through a period of good health, you would still be required to take many medications each day. 

For me personally, these include pancreatic enzymes, sodium chloride tablets, vitamins, and my modulator therapy tablets. The pancreatic enzymes must be taken with each meal, and there can be a stigma around taking medication in front of people. The physio regime can be challenging because your physio volume has to increase when you are unwell, which is not ideal when you already feel more tired than usual.

Everyday tasks can also be quite challenging because you do feel more tired with the condition – and even during periods of good health, I have, on occasion, had to say no to doing things with friends and family at the weekends because of how exhausted I have felt. When you are unwell, it can take enormous effort to complete basic everyday tasks like getting washed and dressed. 

Growing older with CF is also a challenge. As you reach adulthood, you are expected to become more independent and manage more of your health on your own. At the same time, CF tends to progress as you get older, and you begin to experience a worsening of symptoms and can get diagnosed with complications, such as bone and joint issues. 

The biggest challenge of having CF, for me, is the lack of awareness of the complications of CF, such as liver problems, diabetes, infertility, malnutrition, fatigue, and bone and joint problems. 

Starting Kaftrio

I am currently on Kaftrio and have been since March 2023 following a hospital admission. Before this, I was on ivacaftor (Kalydeco), which I started around ten years ago. Since starting the modulator therapies, I have noticed a huge difference in my overall health – my energy levels have increased, my appetite has increased, and the outlook that I have for the future is far more positive than it was in the past. 

But this treatment is not a cure. I still have CF and suffer from the complications. However, the modulators have made things easier for many people within the CF community, and I can only hope that things will continue to improve as science and medical advances progress.

Advice for others

My advice to other people living with CF would be to remain positive. The positivity I have had throughout my life has helped me immensely in achieving my goals. Now I have all the qualifications I need: I can drive, I have a full-time job, and I’m on the way to purchasing my first home. 

When you have a medical condition, it is easy to feel defeated in life and that you will never achieve the same things as other people your age. But it’s not a race or competition; you will get there in your own time.

Looking to the future

My hopes for the future are that science and medical advances will continue to progress and that we will get further treatments and therapies that will eventually help everyone with CF. I also hope we can continue to raise awareness of this often invisible illness. 

Cystic Fibrosis Trust means a great deal to me. It’s not just a charity, it’s a community. It provides people with CF and their loved ones a platform to come together and help each other. The Trust provides people with mental, emotional, and financial support, to name a few. This was particularly resonant during the pandemic when people with CF had to shield for months on end. I remember the Trust doing events on Instagram Live, which we could all join in on. People with cystic fibrosis cannot meet up in person due to the risk of cross-infection, so having this online platform and community was an excellent alternative for us.

More research into CF is so important for two key reasons. The first is that while we have made great advances in the treatment of the condition, not everyone can benefit from these yet due to their mutations, and we should not be complacent until everyone with CF can benefit from new treatments and therapies.

The second reason is research awareness. If we can present research and findings in new ways, especially by using the power of social media, we can raise greater awareness of CF. This awareness can also help to conduct more research into the condition and can help to raise more funds, which are crucially needed to continue to advance the developments made already.

Make your cuppa count this FeBrewary! Host a tea party and raise vital funds, so we can continue to be there for everyone with CF. 

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Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects around 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.

If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.

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