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poorboysalsa t1_j8ez7iu wrote

How do you shower/bathe?

58

AlternativeSign272 OP t1_j8f00k1 wrote

Shower and suffer.

106

FerretFarm t1_j8f1kqt wrote

Hey, no question from me. I have a similar issue though. Delayed Pressure Urticaria. I'd get hives from imperceptible pressure from things like a belt or shoelaces that were a little too tight. The hives would show up a few hours later, and usually last 24 hours or so. Longer if I scratched them, and boy were they hot and itchy!

I've had it for +/- 20 years, but the good news is that for the last 12 or so I've had no hives because my doc and I finally found a drug combo that got rid of them.

I take 5mg of Montelukast, and 5mg of Cetirizine every night before bed. I also have a few Prednisone pills on standby in cast there's a sudden breakout, but haven't needed them for +/- 10 years. One is for allergies, the other is an asthma med. And the prednisone is for killing the hives quick so your body resets, and the other drugs will work.

I obviously don't know if that will work for you, but the combo might be worth mentioning to your doc. I just hope you find a solution.

The big bonus for me, is that since I'm on these pills I never have to worry about my hay fever or cat allergies! :)

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conventionalWisdumb t1_j8f3uvy wrote

Damn I wish my urticaria had some pattern to it like that. I just have to be blasted to the gills with xyzal and cimetidine 24/7 or else I’ll claw off a random part of my body.

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FerretFarm t1_j8f5a3a wrote

I totally feel you, and empathize. Hope you find a solution.

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conventionalWisdumb t1_j8f97ac wrote

Thank you. I hope our collective urticarias clear up on their own like they were supposed to do after a week or two.

2

Xiniov t1_j8ezkcn wrote

Is there anyway you can build a tolerance through immunotherapy?

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AlternativeSign272 OP t1_j8ezqyy wrote

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

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Juls7243 t1_j8f1o6x wrote

Have you tried taking a lot of anti-histamines (like benadryl) before showering? like take 2x the suggested dose 45 minutes before hand. It might help (could be use sparingly when desired).

1

OrangeXans t1_j8f2rwi wrote

Probably better to use Zyrtec or something else, 1st gen antihistamines are not fun over the recommended dose

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conventionalWisdumb t1_j8f43eh wrote

My doc has me on xyzal and cimetidine for chronic idiopathic urticaria and if they stop working it will be on to hydroxychloroquine.

1

STA_Alexfree t1_j8exfdx wrote

How do you shower/bathe yourself?

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AlternativeSign272 OP t1_j8extew wrote

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.)

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SpudTrash t1_j8eyz5m wrote

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

8

D3f4lt_player t1_j8izbw7 wrote

me who's physically healthy and washes my hair every 2 weeks 💀

1

Kehlii t1_j8eye2g wrote

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?

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AlternativeSign272 OP t1_j8ez4h6 wrote

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!

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Dr_Ukato t1_j8f8tm2 wrote

You're a regular Zebra park

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

3

AlternativeSign272 OP t1_j8fbxnb wrote

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..

3

Kehlii t1_j8fbk13 wrote

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?

1

AlternativeSign272 OP t1_j8fc1n6 wrote

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

1

Kehlii t1_j8fgt1u wrote

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!

1

nycpunkfukka t1_j8f58uf wrote

I got this treatment when they placed an aortic balloon pump to prevent me from going into cardiac arrest before heart surgery. It’s apparently so rarely used and only on such severe cases that EVERY cardiologist and surgeon in the very large NYC hospital visited my room that night. The fun part is it’s inserted in the femoral artery in the groin and fished up to the heart, so these total strangers would stare at my chart then lift my blanket and move my genitals aside to take a peek. Such fun.

1

Raspberries-Are-Evil t1_j8f1g7c wrote

Is it all water or something in YOUR water?

Does distilled water cause this as an example?

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unposted t1_j8f3mjd wrote

She did say including sweat and rain

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AlternativeSign272 OP t1_j8fc71r wrote

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

1

Raspberries-Are-Evil t1_j8fg82b wrote

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

1

Longjumping_Deal_336 t1_j8fhcuh wrote

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

1

AlternativeSign272 OP t1_j8fk1fr wrote

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 :( )

1

zulured t1_j8ez4y0 wrote

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

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AlternativeSign272 OP t1_j8ezeyy wrote

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

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russellvt t1_j8f1hef wrote

> 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).

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RagingAardvark t1_j8f99ix wrote

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.

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AlternativeSign272 OP t1_j8fcjy2 wrote

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)

0

Emeryb999 t1_j8f1thh wrote

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.

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2wedcvtg t1_j8f5j37 wrote

this is what I suspect as well. I have this sort of allergy with cannabis. Ingesting it is fine, just don't let my skin come in contact with the flower because it will itch like a bitch

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AlternativeSign272 OP t1_j8fcc2f wrote

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

1

Astranoth t1_j8ezjue wrote

Go back to school, you clearly failed some courses

−67

DJHellduck t1_j8f2rx5 wrote

Curious. One of the main issues in school is that people are afraid to ask the stupid questions.

4

MissingOly t1_j8ex83f wrote

Do alcohol based wipes have the same effect?

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AlternativeSign272 OP t1_j8exgy8 wrote

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.

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Spaceman1260 t1_j8ey3r5 wrote

When did u first notice it?

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AlternativeSign272 OP t1_j8eyirh wrote

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.

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russellvt t1_j8f296h wrote

> 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)

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AlternativeSign272 OP t1_j8fcwwx wrote

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.)

1

MusaEnimScale t1_j8f112k wrote

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.

9

AlternativeSign272 OP t1_j8f163c wrote

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.

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MusaEnimScale t1_j8f1hnp wrote

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.

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AlternativeSign272 OP t1_j8fd91a wrote

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

1

ylmvrg t1_j8exgv2 wrote

What do you do when it rains ?

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AlternativeSign272 OP t1_j8exycr wrote

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.

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fushifush t1_j8f162b wrote

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

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AlternativeSign272 OP t1_j8fd31q wrote

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.

1

NNovis t1_j8eyeky wrote

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

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AlternativeSign272 OP t1_j8eyq4g wrote

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

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RedditAtWorkIsBad t1_j8f2eb3 wrote

This is an excellent question. H20 molecules are incident upon her 24/7, and even in low RH, there is always some condensation that occurs, but if RH < 100% then the rate of condensation < rate of evaporation.

It would totally make sense for some sort of reaction to occur in high RH conditions, where the rate of condensation approaches evaporation.

3

nephilim80 t1_j8ext8u wrote

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?

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AlternativeSign272 OP t1_j8ey59b wrote

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.

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nephilim80 t1_j8f7imn wrote

Positive attitude is great. You're killing it! Cheers

1

Emeryb999 t1_j8f2db6 wrote

That's a good intuition, human palms and soles have an extra layer of cells (stratum lucidum.)

5

GentG t1_j8eyswf wrote

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?

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AlternativeSign272 OP t1_j8f0cl0 wrote

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.

5

Chyvalri t1_j8ez40f wrote

Can you take an antihistamine to help with the symptoms?

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AlternativeSign272 OP t1_j8ezc20 wrote

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.

8

Aw_Frig t1_j8eyhdr wrote

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

4

AlternativeSign272 OP t1_j8eylol wrote

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

4

seabb t1_j8ezed8 wrote

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

3

AlternativeSign272 OP t1_j8ezk1k wrote

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.

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McDylanM06 t1_j8ez3z0 wrote

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?

4

AlternativeSign272 OP t1_j8f0k3z wrote

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.

3

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2

Micksar t1_j8f1a6r wrote

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?

2

honkaponka t1_j8f66bs wrote

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.

2

AlternativeSign272 OP t1_j8ffzla wrote

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!

1

honkaponka t1_j8fkmk1 wrote

Thanks, hope you can enjoy and still find a way to get well,

2

Theheadbanger47 t1_j8ez8kb wrote

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

1

AlternativeSign272 OP t1_j8ezz4u wrote

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.

2

technicolored_dreams t1_j8f21pi wrote

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

2

msnmck t1_j8f5wzi wrote

There is a chance that famotidine could be prescribed with other medications that can cause in increase in stomach acid production. I take an allergy pill and aspirin to help with my sinus pain and I sometimes need an antacid afterwards.

2

Dgoolsby t1_j8f6znf wrote

This is most likely the reason. My fiancée was prescribed the same thing while taking two allergy pills to help alleviate the side effects.

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AlternativeSign272 OP t1_j8fdhe7 wrote

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.

2

SpudTrash t1_j8f0dws wrote

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

1

AlternativeSign272 OP t1_j8f0qyr wrote

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

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SpudTrash t1_j8f42qz wrote

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

1

Rock3tPunch t1_j8f0lq5 wrote

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

Are there any medications you need to take?

1

nutano t1_j8f1195 wrote

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?

1

AlternativeSign272 OP t1_j8f1947 wrote

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

5

grammarpopo t1_j8f3b2i wrote

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.

2

chrisprice t1_j8f1qgf wrote

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.

1

MakesMyHeadHurt t1_j8f1n9n wrote

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?

1

AlternativeSign272 OP t1_j8fdomw wrote

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.

2

technicolored_dreams t1_j8f1ntw wrote

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?

1

AlternativeSign272 OP t1_j8fdyxe wrote

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

1

kingrooted t1_j8f1o96 wrote

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?

1

FelineOverlord t1_j8f21uf wrote

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

1

sztrzask t1_j8f26vq wrote

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

1

Sunshine__Weirdo t1_j8f2f3u wrote

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?

1

J_MareQ t1_j8f2gcl wrote

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?

1

AlternativeSign272 OP t1_j8fecp1 wrote

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.

1

CaravelClerihew t1_j8f2ga7 wrote

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

1

big-chungus-amongus t1_j8f2kx5 wrote

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

1

AlternativeSign272 OP t1_j8fewg1 wrote

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.

1

kanyetookmymoney t1_j8f2m05 wrote

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!

1

AlternativeSign272 OP t1_j8ff011 wrote

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

2

Emeryb999 t1_j8f2mpg wrote

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

1

Bagelstein t1_j8f2qtt wrote

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

1

dani8hydra t1_j8f2ulz wrote

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

1

devil-xx t1_j8f34lx wrote

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 ?

1

AlternativeSign272 OP t1_j8ff59s wrote

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

1

zaphrous t1_j8f3kam wrote

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.

1

AlternativeSign272 OP t1_j8ff9oo wrote

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

1

IAmA-ModTeam t1_j8f3w11 wrote

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1

Njordfinn t1_j8f4x9g wrote

Did you ever get your DNA sequences to see if anything pops up as a reason there?

1

nicgom t1_j8f873s wrote

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

1

AlternativeSign272 OP t1_j8fduwv wrote

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

1

nicgom t1_j8fe28i wrote

Your welcome, hopefully there is something that will make your day to day easier

1

AlternativeSign272 OP t1_j8fbcia wrote

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

1

StrictSorbet9799 t1_j8gfmbs wrote

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

1

AlternativeSign272 OP t1_j8gfp50 wrote

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

2

D3f4lt_player t1_j8j0b1u wrote

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

1