Cystic fibrosis can be quite lonely for those families affected by it - this is not just because of its rarity (for instance, as the mother of a CF baby it’s unlikely you’re going to be able to ask another mother in your NCT group how she gives her baby enzymes!) but it’s also rather isolating because it is pretty important that 2 people with CF don’t meet. And thus CF communities and families cannot meet up to share in their challenges or to support each other in person.
This is due to the high risk of cross-contamination.
There’s some clever and wonderful people in the CF community who explain this very well but here is my “laymen terms” version for my blog - and for the benefit of those in my circle who aren’t so familiar with the ‘ins and outs’ of the CF world 😆
So why can’t they meet and why is cross contamination such a big deal?
I have said before that CF affects people differently - no 2 people with CF will experience it in the same way - and this includes the bugs they might catch and grow.
The bugs someone with CF catches is in part down to chance/luck (although of course there are things you can do to limit risks of catching and growing bugs like good cleanliness/hygiene, being hot on physio, taking prophylactic antibiotics and avoiding stagnant muddy puddles etc.etc.).
When they do catch a bug - like I told you that Arlo tested positive for haemophilus influenzae earlier this year - the hope is that this can be treated and eradicated. But that is sadly not always the case as some bugs are pretty persistent or aggressive. This means the bug remains in the lungs and is never fully gone. When this happens, it is then managed and kept under control as much as possible with a long term medication and physio plan. And it is closely monitored to make sure it is not progressing dangerously or harmfully - in a way that might impact lung function and so on.
One person with CF might catch and grow one type of bug/bacteria that another person with CF has not been exposed to at all. And we want to keep it that way!
So just like people go into isolation when they have Covid so as not to contaminate their friends and family, people with CF stay away from each other as much as possible so as not to pass on their bugs to each other. (And also so as not to encourage the formation of super bugs that are resistant to antibiotics and treatment!)
This means not even being at the same garden party or meeting outdoors. Ever! In fact CF clinics at hospitals tend to be organised based on the bugs that CF patients are growing - so that patients with Pseudomonas, for example, are not even walking through the hospital corridors on the same day as someone who has not grown Pseudomonas.
So that’s why it’s so important that CF families all stay away from each other - and support one another from the relative safety of social media!
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