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I was only diagnosed with KS 2 years ago; prior to 2 years ago I had absolutely no idea what KS was, in fact I had never heard of it.
When I found out that I could possibly have KS (endo to genetic test) - I was reading, researching, asking questions all over the internet re: KS.
When I got the genetic test diagnosis - then I went into overdrive and researched more and more into my condition; joining forums, commenting and asking questions, etc.
KS information is woefully poor in the UK. My endo knows what I have and can get certain specific treatments sorted for me (Nebido and the doses prescribed, maxio-facial treatment, etc) but that's the limit of her involvement; my doctor gives me the injections, sorts out the dosage and arranges blood tests that I have every 12 weeks to monitor my progress.
The rest of the information re: my condition is held with me. If you want to know about KS and how it affects me - you ask me.