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Cystic Fibrosis Trust

Emma's story

Emma Lake is our Community Manager, and has cystic fibrosis. Here she talks about why cross-infection is an important issue for her.

Emma Lake with photo album
Cross infection is a big issue for me, and for everyone with cystic fibrosis (CF). With the discovery of new superbugs such as Mycobacterium abscessus, I worry that the issue is only going to get bigger. Everybody has their own feelings about it. I know that technology has helped; we can contact each other through text, email, social media and forums, but it isn't the same is it? Lots of my friends have cystic fibrosis and it's not nice being told you can't see your friends. I understand the reasons for cross-infection guidelines, but that doesn't mean I like them. Sometimes I just want to stamp my feet and shout: 'it's not fair'.

Fair it might not be, but thanks to those pesky bugs it's something I would rather not put to the test. Even if I am tempted to mix with others (and thanks to peer pressure I have been), I would hate to think I had caught something, or worse given something to someone else with cystic fibrosis. After all, even if you shared the same bugs as somebody else you can only rely on your last sputum sample; what if you have picked something up in the meantime? It is even more important to be careful if you are in hospital. It is likely that people are in hospital for IVs because they are growing new bugs, are colonised, or have suffered a flare up, and if these bugs have resulted in hospitalisation they are definitely worth avoiding!

It can be difficult because it can make you look unsociable or like you are 'selling out' (as teens tend to say!). I really think that peer pressure from fellow patients, or rather, inmates, does make it harder, initially. My first personal experience of this was when segregation was first introduced on the ward. It was very difficult because there were some individuals who weren't so keen on the idea and would just not stay in their rooms. They would stand in the doorway or come into my room and chat and it was awkward to say, 'go away I don't want your germs.'

I don't really leave my hospital room unless I am going out with family and friends, and if I do come across someone else with cystic fibrosis during my travels I make sure that I speak to them at a good distance. I also just rely on good old common sense: if someone nearby is coughing, cystic fibrosis or no cystic fibrosis, I move away from them (although obviously discreetly; not running away at 50mph with a look of horror!!).

Obviously this really sucks, especially if you are bored and there is no one to speak to. If someone else I know with cystic fibrosis is on the ward,  I normally end up spending a lot of time on the phone talking to them or texting them.

I know it is hard. It is really strange that I work with eight other people with cystic fibrosis and yet have only ever waved and shouted at one of them from across a large room. But we still talk all the time and we all get on really well. It almost doesn't matter that we can't go down the pub together for a pint after work.

Maybe we should get the CF teams to invest in some NASA spacesuits!



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