So sorry you have to go through this. I had never heard of the condition before but looked it up and came across info to explain. It must be terribly difficult to experience.
Might try to contact Ashleigh Morris in Melbourne, Australia. Here is an article about her:
The teenage girl who is allergic to WATER | Mail Online
I think the first listing on this page is her:
Ashleigh Morris - Directory | LinkedIn There is a link to send her a message.
I know if it was me, I would really like to be able to talk with someone else experiencing such a rare condition. Good luck and I sincerely hope it does go away instead of worsening!
Does distilled water do the same thing?