Water is essential to most living things, and the human organism is no exception, with its water content estimated between 55 and 78 per cent. But what if you had a reaction to this most basic of substances, and simply couldn’t bear skin contact with it?
My boyfriend knows exactly what that’s like. Since teenage years he has been experiencing an extremely rare skin condition called aquagenic pruritus (Latin for “water-induced itching”). It means that every time after direct contact with water – showering, bathing, swimming – his skin starts to itch with a thousand pin-pricks, and no amount of scratching can alleviate it; he just needs to wait until it fades away some 20-30 minutes later.
Back on day 161 I wrote about this rare condition, and noted that we would do a primitive ‘study’ at home using capsaicin cream, which was studied in a tiny research trial of five people back in 1994, and found to be effective for their symptoms.
I said I would report back, so here goes.
Firstly, there are significant problems with using capsaicin cream several times a day – the stuff stings. It doesn’t really burn when you put it on the skin, at least it didn’t for neither of us (I tried it on my arm out of curiosity), but capsaicin is really difficult to wash off your hands. Even with soap. Even after several tries.1
“The greatest effect it had was burning my eyes whenever I absently rubbed them. I wish I could say the effect on my pruritus was even fractionally as obvious,” explained boyfriend.2
Perhaps it would have been worth it if the symptoms actually got better, but there was no change. So after three weeks of a twice-daily application protocol, boyfriend quietly gave up. I only realised that a couple weeks later when I asked what happened with the whole capsaicin routine.
Yeah. We’re not scientists.
But there is still a lesson to be learned, apart from the fact that capsaicin cream turned out to be pointless. It’s quite an interesting problem – this obvious lack of solid scientific research into aquagenic pruritus causes and cures. When a disease is not life-threatening, and is also incredibly rare, it makes for a lousy research subject, because the gains ultimately would be small, especially for the pharmaceutical company that might end up creating a treatment. More common diseases inevitably receive more research attention. If they are deadly, that’s a good thing – however, there are also incredibly rare and deadly diseases that don’t get enough funding.
So, in conclusion:
1. Capsaicin cream may or may not work for your pruritus, but it does stay on the hands.
2. Life isn’t fair, and neither are research dollars.