CF Week 2025: What I wish more people knew about cystic fibrosis

No one person with CF has the same experience, and while we are all united in our battle with the condition, we all experience life with CF so differently. From my experience, then, I wanted to outline some of the points that I think people may forget about. CF is not a once-size-fits-all experience, and it’s important to give space to everyone’s story. 

It’s more than a lung disease 

Throughout my childhood, my lungs were one of the better managed parts of my condition. Apart from the occasional oral and intravenous antibiotic, for many years I was able to hop, skip, jump, run and quite literally try my hand at any sport my parents let me.  

My problems came from two places: Pseudo-Bartter Syndrome, which essentially presents as major dehydration and salt loss, requiring a hospital stay and a lot of fluids. And the big one for me, DIOS. Distal Intestinal Obstruction Syndrome was the bane of my life. It is when you get a major blockage of stool in your intestines, causing extreme pain, bloating, constipation or irregular bowel movements and acid reflux. At its worst, I was suffering from reflux upwards of 200 times per DAY. 

It got so bad that I had nearly 20 litres of Clean Prep pumped into my body over the space of a weekend, along with multiple enemas. As a tiny child this was not fun. Even worse, I wasn’t allowed to eat, apart from things like boiled sweets and jelly. Safe to say I can’t touch those anymore. As a treat, and largely because my parents felt so bad for me, I was driven directly to McDonalds in Redhill after my hospital stay to break my unwilling fast. The joy of chomping on those fries and burger was unlike anything, until, of course, I would be on the way home and I’d start suffering from the reflux again. It was the hardest time, and to this day I am grateful that I only occasionally have to take Gastrograffin (the most VILE medication in the entire world) infrequently to keep my symptoms at bay.  

It’s invisible, until it’s not  

I’ve always been small, so it’s hard to tell if this is due to CF or just my parents’ genetics. But a lot of us must handle being physically smaller than our friends. Add societal standards and expectations, and it’s just another thing to think about.  

It wasn’t until I got my port that I had a physical signifier of my illness. My scar on my chest is keloid (a raised scar left on the skin after a wound has healed), and after having multiple removal and reinsertion surgeries last year, it’s now a big insecurity of mine. As the weather warms up, I still have to hype myself up to wear items that display the scar. I think CF as an invisible illness, comes with pros and cons, but this permanent change did make me uneasy; it means I have to face up to what I’ve dealt with every time I look in the mirror. Of course, active treatment means tubes, needles and bandages, but the scarring is now something I must be content with.  

Body positivity and CF is also a difficult topic, and it’s not something that has been spoken about much. Cystic Fibrosis Trust have written a useful guide on body image that you can find here. 

Kaftrio is not a cure 

Oh Kaftrio. If you’ve heard my story before, you’ll know that Kaftrio saved my life. I don’t say that lightly, because what hurts me is that Kaftrio is not a cure, and it doesn’t save the day for everyone. Whether it doesn’t work as well for you, you have debilitating side effects, or you don’t have the required mutations, it can feel so hard to watch others around you having these miracle reactions.  

When Orkambi arrived, I was so hopeful that I could use it instead, but I only have one F508del mutation, so I wasn’t able to access it. It’s hard. We need to make sure we give those of us without the opportunity to take Kaftrio the space to be heard, to be seen, to make sure a cure for us all is developed.  

Every single one of us across the world battling CF has dreams, passions and goals. Without them, our lives would be confined to medical terminology and way too many pills. To quote the wonderful Claire Wineland:  ‘I’m not stuck in this belief that challenges are given to us to hold us back.  I am lifted up by the belief that challenges are here to help us move forwards – and that is the difference.’ 

Listen to our special CF Week podcast episode featuring Emily chatting to our host Lucy about raising awareness of CF.