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AlternativeSign272 OP t1_j8ez4h6 wrote

Reply to comment by Kehlii in I am a 15f with diagnosed aquagenic urticaria - an allergy to water. Ask me anything! by AlternativeSign272

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)

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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..

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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?

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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.

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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!

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