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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.)

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