With great power comes great responsibility.
If I told you that three tablets per day could make you feel 10 years+ younger after just two doses, would you believe me?
In 1989 the cystic fibrosis transmembrane conductance regulator (CFTR) gene was discovered. Defects within this gene cause severe deterioration over time in the lungs of people who are born with Cystic Fibrosis (CF). At the time of the discovery I was 7 years old and the life expectancy for a child with CF was around 18 years, and whilst I was pretty well at that time – representing the midlands in gymnastics and playing football and many other sports without noticeable restriction – all this wasn’t without sacrifice. Every day I relied on a regime of physical treatments and medications which demanded hours of effort, all in hope of keeping up with, and being afforded the same opportunities in life that my peers would have.
When the discovery was announced, I remember Mum talking to me about it one day whilst she was doing my physio (which involved lying down on a tilted bed whilst being firmly patted on my chest in order to shake the lungs and keep them free of rubbish). I remember Mum saying to me; “one day in the near future, they will find a cure for you, I promise”. I don’t remember the rest of the conversation, the only other thing I remember about those times is that whoever was doing my physio at the time would always try to make ‘the beating’ as enjoyable as possible. Jokes, tickles, fun things to watch on TV, the dog lying on the bed with me and pretending to do his physio – it all helped turn the arduous situation into enjoyable family time, as weird as that may sound.
Looking back, being honest we expected news of a cure within 5 years. It didn’t happen, but we continued to do our best to keep me as well as possible in readiness for when that day arrives. Gymnastics played a huge role in getting me off to a good start and I believe it instilled a level of discipline within me that was transferable to many other aspects of life – like learning and doing well in other sports, being compliant with treatments, working out and being consistent at the gym, and the importance of work ethic in general.
It’s now over 30 years since the discovery of the CFTR gene… and still no cure… but there is TRIKAFTA. I honestly believe that this is the future. Here’s why: My lung function has improved by 13% – this type of jump was unheard of before Trikafta. For over 20 years I have woken up coughing (pretty violently) for at least 5 or 10 minutes every single morning, not today – no cough, just a smile. I’m able to take a deep breath, and I can feel it in parts of my lungs that I assumed I’d lost. The gym feels easier, the weights lighter, and life – fuller.
I don’t expect many to understand how it feels, and I’ll be honest I’m documenting this simply for the opportunity to look back in the future when Facebook remind me. I want to remember the excitement, the joy and the new lease of life, regardless of how this pans out.
Three tablets per day, two in the morning, one at night. That’s it. Trikafta is not a symptom-treating medication, it works by modifying/correcting the CFTR gene allowing it to do things my CFTR gene was never able to do organically… a bit like when Peter Parker got bitten by that radioactive spider and it changed his DNA… it’s the stuff of science fiction.
I remember there was a guy in the local pub when I was around 21 who found it hilarious to announce to the entire pub that I would die young. Well, the joke’s on you mate, because now look at me – I’m a superhero 😂