I have Aquagenic Urticaria does any one else?!

[sonygirl256]

I've had aquagenic urticaria for 2 yrs now and where I live the doctor told me I am the only one that has this in the city.

I was told to do my research on this disease online because my doctor did not have much information about it because its occurance is so rare.

All the medication that was prescribed didnt work. Even using boxes of baking soda  in the bathtub doesnt work and thats what my dermatologist told me would get rid of the hives in the first place.

I'm sick of just dealing with the growing amount of itchy hives. My doctor told me with aquagenic the hives stay on the torso and rarely go anywhere else. After 2 yrs they have spread and go anywhere depending on the amount of time I'm showering/working out/ or even just standing in the sun or wearing my winter coat, and lately i just always have them.


I've dealt with this all alone long enough and I was wondering if there was anyone else who has it? Are there any other tricks of the trade to deal with this awful disease!!??

thanks alot!! <3 lauren

[kiwicherie]

Hello
My daughter aged 15 has this and its been an ongoing concern of mine that no doctor has really ever taken any notice of it other then we dont really know what it is
I also have the problem with her if we give her water to drink like is recommended for children in hot weather her face swells and she is just so so sore she gets a measles like rash in big patches that is very itchy all over her body
I have combated the hydration problem for now with giving her sports drinks that are high in salts so that she doesnt have to drink to much but can stay Hydrated (im not sure what this is doing to her kidneys but)
as we live in Australia and we sometimes have day after day of hotter heats I had to do something for her or we where in the hospital having her rehydrated with yes WATER as noone would listen to me so it was hospital to fix one thing then home to fix another and it wasnt doing her schooling any good i can tell u
I find this interesting that not many so called doctors or skin specs know anything about this when its so excessable on the internet and seems to be a very common thing after reading many many pages on it
So come on you so called professionals maybe its time for you all to step up the plate and start helping these people its not just a case of I dont know or maybes its very uncomfortable and draining on all concerned I know i have spent years trying to find out what I can do and what it was
Does anyone else have the prob of there face swelling with this ? the swelling is like she has been stung by a bee (the only way i can explain it)
nothing seems to work to help her with her rash at all

[Linah]

Hi. I am Linah from South Africa and i also have aquagenic urticaria. I am black so i don't get red rash what happens is i get mosquito bite like sores and they are very painful to a point that it gets difficult for me to breath as any movement hurts and when i scratch they become even worse. Whether its cold or hot water, sweat, chlorine water, sometimes even a fizzy drink can start it. Has anyone ever had they to the point that they even straggle to breath like me?

[raulin]

the better sistem for ending acuagenic urticaria is steam bath every day so when you are very very skin hot take a shower cold and that's it ...

[Explorer2011]

So sad to see people suffer like this...  Anybody tried Chinese herb or doctor?  I've been a seminar and there were amazing stories about rare diseases.  Lots of the ways to heal is related to diet.  I have a friend, her son had Leukemia and was about to have chemo.  She went to China and met an old Chinese doctor who instructed a very simple diet for her son.  He was cured in 6 months with no chemo.  She is studying Chinese med now.
Basically I believe it is all related to your health condition.  When you had good diet, enough sleep, adequete exercise, your body condition(immune system improves.)  When I don't have enough sleep, spring is like a nightmare to me.  When I have enough sleep, good mood, I don't even have any allergic symptom.  My son got hive recently each time he went to swim.  He never had this before but he has been sick and weak(had flu and cold) for a few months.  He just turned 11 and just got vaccines -Tdap and MMR.  He works out a lot in basketball team and waterpolo.  Personally I think it's too much for a kid.  But his dad thought exercise is good for him.  Somehow I think the human body is giving out warning sign telling its master that it can not take it anymore.  My plan is to stop all his strenuous exercise and wait for a few months to see if he will be better.  I will let you all know.
Explorer2011

[Cougaria]

I developed aquagenic urticaria while pregnant with my son. I only reacted when water touched me. No issues with sweat. At first I thought I was nuts. After about 4 years, I finally told my doctors. The first one was like try this, an OTC allergy medication. It didn't help. They they put me on Attarax (s/l). It helped. Then I got pregnant again. Now it's much worse. They had to triple my dose. On top of that, I had one doctor tell me I couldn't be allergic to it and it was likely a chemical, despite being exposed to all sorts of waters. Now I react to sweat and any water at all. My kids hate trying to explain why I can't go to the swim park with them like other parents. I find keeping cool even in winter, carrying an umbrella, as well as teaching those around me helps greatly. The medicine really does help most of the time. I hope this helps.

Erin

[dianamarthann]

Yeah, I have it too. Mine is minor case, it just gets annoying. It's really annoying. :\ but yeah, I understand what you feel! It *****!