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“Life isn't about the time we have available; it's about the memories we have.” – Jamie’s story
I was first diagnosed with cystic fibrosis at six months old. Since then, I have been on a strict treatment routine. Now, I take 50 tablets a day, as well as three loads of nebuliser medications and two lots of autogenic drainage (AD) breathing techniques every day to keep my lungs fighting fit.
My biggest challenge
Things can change so quickly with CF; some days, you wake up feeling like you can conquer the world or run a marathon, and then the next day, it can be a marathon just to walk up the stairs without struggling to breathe or to go shopping while exhausted from a chest infection.
As I've gotten older, the biggest challenge has been the mental toll cystic fibrosis can have on you each day. When I was born, I was told I'd be lucky to reach double figures in age, so to be 38 years old now is incredible, but it can also be tough to cope with the challenges that getting older with CF brings.
The impact of Kaftrio
I've been on Kaftrio for three years now, and it has transformed my lung function from 41%, and discussing transplant with my CF team, to 71%. This change has enabled me to run the London Marathon for the Trust, and I am planning to do it again next year!
Advice to others living with CF
Don't let your emotions with cystic fibrosis overwhelm you, and never bottle them up, thinking they will go away. In recent years, I've realised just how important it is to have people I can confide in when I'm having a challenging day. I have also found it helpful to have friends with CF that I can talk to online who understand my situation, particularly when I have days full of doubts and struggles.
Hopes for the future of CF
I would really like to wake up one day and not have the average age of someone with CF. It would be great for new generations of CF patients and their parents to not have to go through the unknown fear of learning about life with CF.
Me and Cystic Fibrosis Trust
The Trust has been a huge part of my journey for as long as I can remember. They have supported me, helped me find support in tough times and included me in their campaigns. I've been so glad to be able to raise money for them when competing in events such as the London Marathon, as it's so important the Trust can continue their research.
A life unlimited
For me, a life unlimited is doing the things I love most. Life isn't about the time we have available; it's about the memories we have and the experiences that make us smile. Life is about moments in time, not about counting time.
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.
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects almost 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.
Join us in FeBrewary
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.