8
Which advice would you give to someone who has just been diagnosed with 48,XXYY syndrome?
See some advice from people with experience in 48,XXYY syndrome to people who have just been diagnosed with 48,XXYY syndrome
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.
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.
Posted Mar 4, 2017 by Ash 1120
