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BRIEF DESCRIPTION AND HISTORY OF CYSTIC FIBROSIS
Whilst this is easily googled, Cystic Fibrosis is a genetic lung condition that affects the lungs and digestive system. As of 2021 it affects more than 10,500 people in the UK, with people being diagnosed from in utero (still in the womb) to middle age (the later often having milder form of CF being misdiagnosed as asthma). Something you’ll often see when looking into our condition is the short life expectancy, sadly this still is the case but with amazing medical breakthroughs happening every few years this expectancy is nearing “normality”. I’m very happy to say that as of this year (2023) the average life expectancy is now 50, opposed to 32 which was the average the year I was born.
These numbers can seem a bit confusing considering I just said some people don’t get diagnosed till well after their 30’s or even 40’s (as in the case of a guy I met in hull royal who was in his early 40’s and had literally just been diagnosed that day). To clear any confusion ill show you something my psychologist told me when I was 14. Basically, like many life-long medical conditions and disabilities CF is not a blanket condition. 2 people can have the exact same mutation, same background and even grow the same bugs but can have totally different symptoms. As for life expectancy and diagnosis these fall into a form of bell curve. (I’ll show you a picture of a bell curve rather than explaining it…. This is a blog about CF I’m not forcing you to learn simple math haha)
Update- For children starting Kaftrio/ Trikafta the life expectancy is now... 82!
So as I was saying the peak of this bell curve are people like me that would more than likely meet that average life expectancy, while people to the left will sadly pass before that age (due to illness, complications, surgical issues, other conditions etc) others to the right will often outlive that expectancy possibly due to late diagnosis, medical advancements or after meeting so many Cfers probably just pure stubbornness or to spite a doctors predictions (Fuck you the doctor who told me and my parents I would see 16! I’m 28 and a total legend!). So, if anyone reading this with a logical brain that lives on facts and figures don’t threat. I mention a way around it a few times in this blog. I think its best described as the odd sock hypothesis, or at least that’s what I’m gunna call it.
Anyway, I could go on about mutations and other facts about Cf but it’s difficult trying to balance a in depth yet small explication with a description better off in a science class. To put it simply we are all mutants, yep, like the X-men. But instead of laser vision, metal claws, teleporting or mind control we have chest infections, ungodly bowel movements and an extraordinary talent to freak “normal” people out when giving them our medical history…. Although many of us do have a good six pack, odd fashion choices and strange hair….or that could just be me…. But I swear I wear that cape for warmth no other reason *cough cough*
That being said growing up the only info I could get on CF was a book called Growing Older with Cystic Fibrosis which was informative but was 90% from a female perspective. Not a lot a 10-year-old boy could do with knowing about experiencing periods for the first time. Hopefully if any young men reading this might find this blog helpful.
If you want to know more about CF https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis
other symptoms
-straight thumb nail -arthritis
-nasal polyps -bowel blockages/ obstructions
-clubbed fingers -CF Belly
-Liver and spleen issues -low vitamin levels of A,C,D and E
-infertility -95% of males -CFRD (cystic fibrosis related Diabetes)
-Great sense of humour, drive and increased attractiveness
-The ability to make up the second to last item of a symptom list for a joke.
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