I am a 15f with diagnosed aquagenic urticaria - an allergy to water. Ask me anything!

Do you have a label that says "dry clean only"?

Probably somewhere.

How do you shower/bathe?

Shower and suffer.

Is there anyway you can build a tolerance through immunotherapy?

No clue. I have tried to get into medical trials, but they were all either full (surprisingly) or didn’t want me because I have other pre-existing conditions that may interfere

How do you shower/bathe yourself?

Shower and suffer. I don’t trade in hygiene for comfort. I try to shower every other day though, to avoid bad reactions, but in the summer it’s every day. Washing my hair adds time to showers and the dripping afterwards adds time to drying off, so I try to only wash my hair two times a week (luckily my hair is naturally not super oily.)

Would it be easier for you and still hygenic if you used a washcloth instead?

I do use a washcloth on non-shower days, but it really doesn’t get me quite as clean.

That's a shame. Have you ever used dry shampoo?

No, but that’s something to think about!

Do you know why your body reacts that way?

I have the same condition and have always blamed some mental factors for it. But i am not 100% sure.

I was in the hospital once to get me checked after i got diagnosed and they invited the whole station to take a look at me because this is such a rare condition. I felt like a zoo animal. Did anything like this ever happen to you?

Many times!! I am the queen of “I’ve never seen this before” due to multiple rare conditions (such as a pre-cancerous subungual melanoma on my middle finger, which is typically found in black men, 50+, on a thumb or big toe) but diagnosing was tough. I had to sit for around an hour at Children’s Hospital telling them that “no, temperature does not change it. no, it’s not chlorine” because it’s so rare that they thought it was everything else!

You're a regular Zebra park

(That's a reference to the doctor saying "When you hear hooves, Think Horses not Zebras)

Haha, my mom and I love that saying!! I get my zebra-ness from my mom, who has a whole lot more interesting conditions than me. Perhaps I should encourage her to do one of these..

I know exactly what you mean, having to tell everyone that you have ruled out shampoo and temperature and everything else is so annoying, especially if you visit multiple doctors for it.

Two more questions if you want:

Did you try any treatments or did you just accept it? Do you react to your own sweat?

I do react to my own sweat, it makes summer super fun. I did try some meds, but they stopped being effective.

It is very interesting to hear from someone with the same condition.

Besides various other things I tried a therapy where they drew some blood and immediately injected it back, so my body "would learn not to react to itself". It did not help however.

It started when i was like 13. But it also started to get lesser and lesser when i turned 20, i think. I am 27 now and it rarely flames up anymore, i really hope it works out for you and will subside with time!

Thank you for this insight! I sure do hope that it dies down lol

Is it all water or something in YOUR water?

Does distilled water cause this as an example?

I have tried everything. Name it, I’ve tried it. Distilled, town water, pool water, another pool’s water, ocean, lake, rain, sweat… etc.

Bummer. I hope you can figure it out at some point!

Have you tried RO water... for your skin not for consumption

We use RO water for drinking, and I have indeed reacted to it (aka I spilled my water bottle on me and broke out in hives :( )

How can you be allergic to something you're made 80% of?

I dunno, honestly. My body is wack, I have rarer medical conditions than this haha

I have rarer medical conditions than this haha

Thats pretty scary, as there are supposedly only 50 to 100 documented cases of aquagenic urticaria (sources vary slightly, but the number is incredibly low).

What's really crazy is there have been multiple amas by Reddit users that have that.

https://www.reddit.com/r/casualiama/comments/dzkvyg/i_am_a_person_whos_allergic_to_water_ama/

https://www.reddit.com/r/AMA/comments/wlzc1/i_have_aquagenic_pruritis_which_means_im_allergic/

https://www.reddit.com/r/AMA/comments/e2hrth/i_am_allergic_to_water_aquagenic_urticaria_ama/

https://www.reddit.com/r/AMA/comments/nrdwuo/i_am_allergic_to_water_ama/

https://www.reddit.com/r/IAmA/comments/n426s/iama_a_person_that_gets_an_irritating_and/

Oh, dear.. the only one I found was from 13 years ago.

I had a similar reaction to water when I was younger, and we never pursued medical care for it because it was relatively minor, just an annoyance. I'm sure there are many more like me.

That’s what happened to my mom!

Doctors told me I was the 51st documented in the US. They also suspect that there may be more that just don’t know, or may be less that have been misdiagnosed (i.e. like it’s actually temperature urticaria)

The first conceptual leap is that it seems to be specifically the skin having a reaction to water and not an ingestion intolerance. It still seems wrong because your cells contain water, but the outermost layer of skin is very different from a traditional live cell.

Just some thoughts from a trained biologist who also had the exact same first reaction lol.

Thanks for this, now I can tell people that my cells are just built different (kidding, kidding.) But really, I appreciate the insight! :O

Do alcohol based wipes have the same effect?

I don’t think I’ve noticed that, no. I think that perhaps my skin would be a little pink at most, but that likely amounts to my skin just being sensitive.

When did u first notice it?

Hmmm, good question. I remember when I was 9 or 10 complaining about being itchy after swimming in the ocean, but at that point we thought it was a hormonal/puberty thing (as my mom had a short phase of that type of thing around that age) and we didn’t go to a doctor until I was around 12-13 and I walked out of the shower one day and realized I was covered in red splotches and hives. Then, after a few different dermatology/allergist visits, I was formally diagnosed.

Then, after a few different dermatology/allergist visits, I was formally diagnosed.

No offense, but considering how ridiculously rare this disorder is (like 50 to 100) documented cases... "a few' visits would seem low (ie. Took me "a few" just for a regular allergy panel with treatment, etc)

I went to my local derm, who then referred me to Children’s in Boston. I went there, was formally diagnosed and prescribed over-the-counter antihistamines. Those didn’t work, so I went back! They said, basically, “we don’t know what to do, we’ve never seen this before, if you’re okay with the reactions then just leave it be, watch for trials and new treatments.” (Something along those lines.)

Have you ever looked at toxic mold as a root cause? Your condition is not common, but for the people that have it, mold/mycotoxin exposure is one of the most common causes. Neil Nathan, MD, discusses your condition in his book Toxic.

Woah.. never knew that! I’ll have to read that. But no, we don’t have mold. My dad is very on top of that stuff.

That’s good! But it can be school exposure, or hidden, or a really bad exposure in the past that your body didn’t recover completely from. Definitely check out Dr Nathan’s book since so few doctors have experience with this.

Ooh, I would hope not. I go to a fancy academy highschool, so I would hope there’s no mold! 🫣

What about water consumption? Where does the allergy start and stop?

I can drink it, although I did just read the other Aquagenic AMA from 13yrs ago, and they said their lips got dry. I do tend to have dry lips, so now I’m wondering if that’s got something to do with it.

It's confusing. You can wash your hands, that doesn't trigger the allergy, but water on your back and chest trigger it. Sounds fun. Can you wash your feet?

I can! Sometimes there’s little hives on the top of my feet (and my legs tend to be the itchiest, but there’s usually no hives???) It’s very fun. And honestly, I’m confused too.

Does humidity factor into things at all? Do you have to use a dehumidifier in your room during wet summers?

I think humidity would only factor in if it made me sweat more, although I have noticed worse reactions in the summer.

I have hyperhidrosis so this is a new fear unlocked 😣

Summer can be evil!

Tradesies?

Can you take an antihistamine to help with the symptoms?

Have tried. Have failed. We started with low dose of Allegra, then bumped that up and started Zyrtec and something else (famotodine i think) and eventually they stopped working.

What do you do when it rains ?

I stay inside if possible, and I always have an umbrella. Of course, being wet at some point is unavoidable, so I just take the reaction and bear it lol.

Is it something which is expected to get better, worse, or stay the same as you get older? Is it only pure water which causes this or is it everything, e.g would milk be different as it contains some fats and proteins?

Hmm, I don’t know. I haven’t noticed any changes other than while on meds. I am part of a few Facebook groups with people of all ages having it, though. And I’m not sure about the milk thing.

How long do the hives last? How painful are they and how are u dealing with being allergic to water like what is the biggest impact it has on your life?

I used to LOVE to swim! Now it hurts, which sucks. The pain level fluctuates, sometimes it’s quite bad, other times there’s no pain at all, just some red spots and non-it by hives. It’s wack. Sometimes they last 40 minutes, sometimes 5.

Taking a break for around an hour. Will be back to answer all!

What causes the reaction? Like what is the official process behind it?

No clue. I just know when I touch water, my skin isn’t happy.

Could it be the chlorine or the fluoride in the water? Have you tried distilled water?

Name it, I’ve tried it. City water, well water, filtered water, distilled, ocean, lake, river, pool, another type of pool, hot tub, etc. It all caused the same reaction.

Did you scream "For science!" before each test?

No, but I wish I did.

This might sound strange but what happens if you pee on yourself? Would you be willing to pee down one leg and pour water down the other?
(I am guessing it might cause an unusually bad reaction since it is another way to get rid of contaminants and I would suggest the immune reaction happens as a result of some contaminant, that is produced by your body, when it reacts with water, rather than a reaction against the water.
If the reaction is the same level I would be inclined to think that the disturbance is caused in your skin. If no reaction I would be confused :)

Would you be willing to try a sauna or steam bath just to see what happens? (Probably a bad idea)

Have you tried rubbing a wet skin area on someone else to see if they also exhibit a reaction?

Have you addressed or found a cause for the skin itches you mention?
(I can have something similar sometimes - very dry feelingskin with a firey/scorching itchy feeling, mostly on my arms.)

Do you use/been prescribed any skin creams and do they reduce the rashes?
(I had a "skin allergy" on my legs that became a lot better after using a fat skin cream for a while, even if I still tend to get rashes when exposed to the sun)

You mentioned a "lottery". Do you keep a diary? ie, of what/how much/often you eat, if you expose yourself to sunshine, exercise and the severity of any rashes.

What does your blood works say? Any tendencies towards lowish or highish values within the "normal" ranges?

Have you tried supplementing things like Zink? Tried fasting or low-carb / keto diet (several conditions depend on high-carb diets)?

Any other weird/unaccounted for symptoms?

Thanks for settling my curiosity.

Woah, this is a lot. Let me break it down lol.

Pee - I haven’t noticed any extreme reactions, then again I haven’t investigated in any form of detail.

Sauna - I have done this. It’s not fun. Causes me to sweat, and then I get super itchy.

Wet Skin - Yes, actually! My mom had me try that on both her and my dad. They didn’t get any reactions.

Cause - No clue.

Creams - Haven’t been prescribed any, but we but hydrocortisone on hives.

Diary - I did, for awhile. Specifically for this lol. We didn’t find any patterns.

Bloodwork - had it done lots of times, always been normal.

Supplements - I have not tried diets.

No problem, let me know if you have more questions!

Were you affected at all in utero? I feel like the amniotic fluid would have been an issue. Or was this something that started later on in life?

No clue. Started presenting symptoms when I was around 9-10 I think.

Is the water reaction same as if you ate something you were allergic to? Does taking antihistaminic meds possibly help or lessen the reaction? Or does any medication help or prevent a reaction or possibly speed up the healing process? I'm also wondering is it the H2O You're allergic to or the minerals that are dissolved in water?

I don’t have any food allergies, so I’m not sure on that. Antihistamines didn’t work, but we’re looking into different things. I think it may be the H2O, because all different types of water trigger it.

Have they tried managing the symptoms with an antihistamine? If so, does that give you any relief at all? Any chance that you might outgrow it or that hormonal birth control could change it?

Antihistamines stopped working, but we’re looking into different kinds, and an experimental shot.

Have you tried anti-histamines (like Zyrtec) before showering to see if that helps? One of the theories involves histamine release

I did try Zyrtec, and famotodine, and Allegra. We were seeing progress, until we didn’t anymore and it started going back to how it was, so I decided to just face the reaction. I have heard there’s some form of shot, I think my mom is looking into that.

Famotidine is an anti-acid/anti-reflux drug (Prilosec is the brand name). Maybe it's loratadine (Claritin) you're thinking of?

It was Pepsid. Just checked. I also do not know why I was prescribed that. I think it’s got something to do with what msnmck is saying.

That makes perfect sense. Sorry if it seemed like I was doubting you, that wasn't my intention!

It’s okay lol, I understand!!

Edited with a second photo of me, proving that the first one is me.. hopefully this counts.

I know the people in the ISS do some Form of dry showers, is something similar available to you?

I have no clue, but thank you for the research topic :o

How does brushing your teeth affect you? Does it chap your lips?

It doesn’t affect me. No water in my mouth or anything like that affects me.

have you tried heavy water (D2O)? it's expensive as fuck and impractical but it would be interesting to see the results

I haven’t! I’ll look into it

Are there any anti-histamines you can take on the regular that would limit the hives\effects?

My wife is allergic to dust and animal dander as well as a multitude number of pollens. She pretty much takes an aerius pill every day in order to at least minimize the effects. If she forgets for a day or two her reactions come back hard.

Do you have any other allergies?

Tried Zyrtec, Allegra, Pepsid. All a no-go.

Have you tried dexamethasone (aka Decadron)? I have some experience with it for an issue similar (but not the same and not as rare) as yours and it was a game-changer.

Will talk to my docs! Thanks!

Have you tried corticosteroids?

That's always a mixed bag, and if you have other conditions, it may be contraindicated. But if you haven't, I'd at least talk to your doctors about it.

I will talk to my doctors, thank you!

Just plain water, or anything with water in it? Like if you dripped some soup on your arm, does it react? Or if you licked said soup off your arm, does it react to the saliva?

I think just water, but I also have not tried. Watermelon juice triggers it though, and I definitely didn’t find that out by spilling an entire jug of it on me.

Did you self diagnose yourself ?

No. Doctors at a Children’s Hospital dermatology/allergy wing.

Is it just a skin condition or you have problems consuming water?

Are there any medications you need to take?

Just skin. Tried meds, they’re a no-go so far.

Are you allergic to diet Dr Pepper?

I’d have to try it lol

What do the doctors say can be done?

They don’t really know, there’s not many documented cases.

Are you allergic to lotions and products that contain water? Can you eat watermelon? Are you allergic to other people's sweat?

I don’t know about other people’s sweat, lol. Never had a problem with lotions. And I love watermelon.

Sorry if that sounded weird I just meant the gym or sports or something lol. Watermelon's so yum.

No worries, lol.

What percentage of water does a fluid need to be for you to have a reaction? For example if you bathed in milk would you have a reaction?

Not sure. Haven’t tried lol

Does temperature have any effect on the severity? Maybe colder showers lead to fewer hives, and you could get used to them.

Nope. Temperature doesn’t change anything.

Have you tried any alternative medicine therapies in addition to your current medications? If yes then which ones?

We’re looking into an experimental shot.

I have the same condition since i hit puberty. For me it is a autoimmune disease that was triggered by puberty hormones.

I take Rupatadine Pills, so nowadays i hardly notice it anymore. Its specially for chronical urticaria. Maybe you could try it?

Hmm, I will look into it. We think it may be puberty related, too.

Does increased humidity (like going somewhere tropical or just the micro-environment around your face when your wear a face mask) trigger it?

I don’t think so, unless it makes me sweat more. Sweat = reaction.

What happens if you drink water?

Nothing. Drinking water doesn’t affect me.

Does that make you afraid of water? Or do you accept your fate and go for bath (just like my lactose intolerant friends accept their fate and drink milk)

Have you tried alcohol based wipes?

Have you tried distilled/deminarized water?

Ps: finally found someone who has more strange allergy than me.. I'm allergic to certain light in UV spectrum

That means allergic reaction within minutes of exposure to sun or within hours under certain types of lights

Not “afraid” per say, but wary. I accept my fate and shower, then suffer for a little while lol. I haven’t tried alcohol wipes, except for at the doctors (I think my skin went a little pink, but could be skin sensitivity) I have tried distilled, all types of water affect me. Also, I’m so sorry to hear about your allergy!! That doesn’t sound fun.

You mentioned that you have other rare diseases. Did you ever did a dna test like myheritage or 23andme? I case you did, you can download your raw dna data, reupload it to promethease and get it analysed for free. You might get some interesting insights :) best of luck to you!

I have not done a DNA, but my mom has and I inherited my medical abnormalities from her. I will ask about that!

Do you think you would ever get a tattoo? Would that cause a problem?

I have no clue. I assume not?

What about completely purified water, like reverse osmosis, distilled, etc? Is it really the water or is it certain minerals/contaminants in the water?

I’ve tried all types of water, and they all affect me.

Have you noticed a difference between different types of water? Like salt water vs. regular water vs. purified etc

Nope. All affect me the same.

If you're allergic to water then how do you keep yourself externally hydrated ? Doesn't it causes any kinda of severe infection or How do you deal with it ?

Lotion doesn’t seem to harm me. But I do consistently have dry skin unfortunately.

Do you know of it's related to temperature? Or content of water? I.e. saline might be better since it's more similar to natural osmolarity. Or of it's due to fluoride or chlorine in water. Maybe could be metal like lead or copper if highly sensitive.

Not related the temperature. I’ve tried all types of water: pool, town, city, well, ocean, river, distilled, lake, etc..

Did you have a good weekend? I hope you did :)

I did, thank you haha!