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Find out all you can about this disease, try to get in touch with other people who have Alkaptonuria, but remember everyone has different pain thresh levels, not everyone is the same with this disease, I didn't know I had it till I was 63, up to that point I did everything, so don't despair. Just because someone in there 30!s is suffering really bad it doesn't mean to say you will.
I say live life as you want to, don't let it make a difference.