‘You’re allergic to water?’
‘Well no, not really, it’s a skin condition rather than an allergy.’
‘But can you take a shower?’
‘Yes, but I get itchy red blotches all over my torso.’
‘Same. Usually worse.’
‘Can you swim.’
‘Yes but it happens in any water – hot, cold, the sea. New waters are usually worse until my skin gets used to it. I even get it when I sweat.’
‘Oh, wow. How is that even possible?!’
This is pretty much how the conversation goes every time I explain to someone I have aquagenic urticaria. To be honest, it’s not something I talk about very often, or even write about. I’ve had this blog for nearly five years and I think it’s one of the first times I’ve mentioned it!
That’s not because I’m embarassed by it or trying to hide it, but it’s just something I am pretty used to dealing with. But as it’s Rare Disease Day, I thought I would share my experience of aquagenic urticaria.
It all started when I was 13 and suddenly started getting hives and being itchy everytime I went in water. These conditions are often triggered by a change in hormones or an illness and the onset of puberty started mine. I went to my GP who diagnosed Aquagenic Urticaria and said I would probably grow out of it – hmm, 24 years later and still going strong!
To be honest, I realise now that I was lucky to have a GP who recognised the condition as I hear so many people struggling to get a diagnosis or having their symptoms dismissed. However, he never referred me to an allergist and I never really saw the need.
I was prescribed barrier creams to stop the water penetrating the skin in the shower and strong deodrants to reduce sweating, but neither had any real effect. So I just got on with it. When I was younger, I would feel a bit embarassed when I came out in a rash at the pool or on the beach but now it rarely bothers me.
Most the time, I am so used to the sensation that I don’t really notice it that much unless I focus on it. It’s uncomfortable and irritating but on a day-to-day basis, nothing I can’t handle. When it is particularly bad – usually in hot water, a new water, or when I sweat – I take antihistamine to try and reduce it.
I am lucky that my symptoms are not debilitating but I know other people can suffer a lot more. Aquagenic Urticaria is often touted as a very rare disease but to be honest, I think it’s more common than is reported. I think many people, like me, experience it but don’t neceassarily report it or are not given the support they need from their GP. I would like to see more research into the condition, especially as it looks like my daughter is also affected by it.
What is Aquagenic Urticaria?
Aquagenic Urticaria is a condition where the skin becomes red, itchy and inflammed after coming into contact with water. In most cases, this type of physical urticaria does not involve the immune system and therefore symtpoms do not progress beyond the skin. In very rare cases, it can be IGE mediated and people may experience throat swelling or anaphylactic symptoms that require epinephrene.
How do you treat Aquagenic Urticaria?
Most people’s symptoms will calm down within an hour of exposure or can be soothed with anthistamine. For more severe cases, it is possible to try Omalizumab injections or UV light therapy. People at risk of anapyhlaxis will need to carry adrenaline auto injectors.
To talk to other people with the condition, join the Aquagenic Urticaria Facebook Group