2127744 tn?1335367748

Looking for those who have Aquagenic Urticaria/Pruritus

Good afternoon everyone. I am a student currently enrolled in a rare diseases course and wondered if anyone here would be willing to talk to me about your personal experience with Aquagenic Urticaria: how you were diagnosed, your symptoms, and how you felt after receiving the diagnosis. I recently gave a presentation on this disease, but I was curious to hear from those who have it since I know AU can vary from person to person. Thanks ahead of time and have a great day.
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Avatar universal
Many people get Aquagenic Urticaria, Aquagenic Puritis, and temperature related hives all mixed up.  There is so much misleading information online about Aquagenic Urticaria, it is no wonder so many people (including most Physicians) are confused.

It is a histamine reaction on the SKIN.
It is very very rare.
It appears to begin after some sort of shock to the system such as antibiotics, childbirth, and puberty.
It affects the majority only on the torso (front and back,) neck, and the lower portion of the chin.
Few also have leg involvement.
It seems to get worse as time goes on.
There is no known cure and antihistamines don't always work.
It is NOT a chemical reaction from something in the water.
It IS the water itself.
It is a histamine reaction.
Soaps, water temperature, and water type do not make a difference.  One can get the reaction from showers at home, showers on vacation in another state or country, swimming in the ocean or a pool, sweat, tears, and any type of water from any source or place.  So that rules out it being "something in the water."

It can happen in any temperature of water so that seperates it from temperature allergies.

It is difficult to understand what it is like to have hives show up on your skin because you showered and how hard is it on a child who can not hang out at the beach with friends or go swimming at the local pool?  

There needs to be an end to all the misleading information online and the people who completely dismiss that it is possible to be "allergic" to water are unbelievably ignorant in the things that they say.  I pray it never happens to any of them or someone that they love.  

If there wasn't so much bad information and "shocking" news stories treating the people who suffer with this condition as freaks of nature, I might be willing to tell you a story in our family, but people are so unbelievably ignorant in their hurtful comments that we are unwilling to share more then we just did.  Good luck to you in your research and please keep it true and real so that others may learn.  God bless you.
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Avatar universal
My first comment, I meant to say it is a MAST CELL reaction on the skin.  Thank you.
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Avatar universal
I've been diagnosed with Aquagenic Urticaria - i'm from Bournemouth, UK. Aparently i'm one of only 16 in the UK who have it. I have lived with getting rashes from water since i was 13 (I'm now 19) and it's had a massive knock on my confidence and it makes me really self-conscious. I've been to numerous hospital trips to get treated and tested... I had the water test done with 1 arm with tap water and 1 arm with distilled water... The arm with tap water took just 5 minutes to flare up the rash and hives, the distilled water took 6 minutes. I also have Asthma and Hayfever if that's anything to account for? I'm currently on 360mg of Fexofenadine Hydrochloride and 20mg on Cetirizine Hydrochloride every morning, but that's about to be doubled. I'm on a 6-month trial of these, and 3 months in, they haven't done anything to help...
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Avatar universal
Sorry i forgot to add:

I get the rash when in the shower, in the sea, when it rains/hails/snows/sleets, when i sweat (getting hot in just clothes OR even doing any form of exercise), when i drewl in my sleep (i get a red line with hives down my cheek), when my eyes water (which, seeming as i have Hayfever is a nightmare). I get VERY dry skin on my face, back and front. I come up in hives from my face right down to my feet with the inflamed rash - it feels as my skins burning, and if i itch it, my skin flakes off - even when wet. I hate the fact i get the rash when i exercise - i used to be 7th in the UK for 100m & 200m, but when my rash started up i coudln't deal with people looking at me as if i was a freak, so i gave up... I don't like having people around me when i get the rash - they don't understand how it feels physically nor psychologically. My mum and dad have struggled with the fact i have it too - they don't understand how i have it seeming as though we don't have any family history of urticaria... It's also hard as a uni student - we have a beach down the road where everyone goes, but i can't because of this - so it obviously affects my social life in a negative way.

Need anything else, just message me :)
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