Ok, so here we are, one week to go until the triathlon and we are seeing so much support for our cause and it’s incredibly heartwarming. I wanted to end my blog on a high and give you some brief information on how far medicine and research has come for CF and how the lives of those affected are truly being transformed for the better - this is why the money we raise today is so important!
Back in the 1960s, half of those born with CF died before age 10. Later, with the development of antibiotics to treat infections, half made it to about 18. Then, around 1990, the CFTR gene was discovered (previously mentioned in chapter one), and that has catapulted us forwards to today, where half of those affected now make it to 40, and half of babies born today with CF are expected to go into their late 40s. This is a huge difference in life expectancy for people suffering with CF
Fast forward to 2019, and three drugs called Orkambi, Kalydeco and Symkevi were approved for use on the NHS. This was huge news, because it was the first group of drugs for CF that actually target the underlying cause of CF rather than just managing symptoms like infections. These drugs aren’t quite cures, but they are patching up the faulty genes that are causing problems, significantly reducing or stopping the progression of the disease. In 2020, another advanced medicine like this was approved on the NHS - Kaftrio.
The Cystic Fibrosis Trust drove the campaign in the UK to get the latest and best drugs into the NHS for us. They are now working on ensuring everyone with CF has access to these drugs, as at the moment, children under 12 still don’t qualify and neither do people with certain genetic mutations. My sister Abi is also not eligible for Kaftrio, which would probably extend her life.
These new drugs have made such an impressive impact on people’s lives. There have been reports of people who’ve struggled to climb their stairs now being able to run again. People coming off the waiting list for a lung transplant. People have stopped getting infections and managed to stay out of hospital for months or sometimes longer for the first time in their lives. People can breathe again. People with CF are finally being given a chance to live longer and better lives.
Beyond all of this, beyond today’s gene modulators, the medicines being looked at for the future are gene therapy, gene editing and mRNA therapy. It is a really exciting time in research and treatment, as it finally feels like we are beating this one, but we can’t do it without donations. In the future, we could cure CF.
So please, give what you can to this research - there is so much opportunity here to improve things dramatically in just a short time. On behalf of all those individuals and families battling with CF today, thank you.
(If you want to find out more about the incredible work Cystic Fibrosis Trust does, take a look at their website: https://www.cysticfibrosis.org.uk/the-work-we-do)
“This experience has been such a therapeutic and reflective one for me, my sister and Sarah. We have turned something that was such a hard thing to deal with into something really positive and inspiring. I want to thank each and every person who has followed us on this journey, read the blogs, learnt something about CF, and of course those who donated! We are so so grateful for all your love and support.
I have trained incredibly hard for this Triathlon and I am really looking forward to doing it next week, running hand in hand with my best friend and crossing that finish line together. I know I will be in tears, and these tears will be such a mix of emotions, everything coming together in that moment in time for my sister and for this cause. Thank you all for reading. Wish us luck!” - Me, Rebecca Howse
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