Hi my daughter’s condition has baffled several GPs and consultants in two specialities - though it’s been confounded by uncovering iron overload while tests were being done. That’s genetic (haem- or hemochromatosis) and until recently thought not to affect young women, so the poor girl is already feeling she’s a freak. Is anyone else here from the UK (other than Simon)? If so, any ideas or suggestions please about how to convince our doctors of our home-diagnosis of KLS? Or where to find a doctor who actually knows something about it? I have the impression that ours are starting to think she has a psychiatric disorder - they are certainly nudging us in that direction now that “it’s post-viral” seems to have been worn out, after 5 or 6 episodes. And if I keep taking her along to new doctors with this mysterious sleeping illness - which she can’t remember anything about, once she’s properly awake - I shall be accused of Munchausen’s by proxy any day now! Thanks, Gill

Hi there my daughter is 17 years old, she was diagnoised with kls it took a hell of a time, for anyone to believe us, but got there in the end, after having an episode in the hospital, but i will check in with you we live in cornwall, i will try to help you if i can t-jay

Thank you. Sorry to learn about your daughter but it would be great to know the name and whereabouts of the doctor who finally accepted KLS is real. My daughter had a hypnotherapy session yesterday, started doing the mental exercise she’d been taught to do and is now pretty well unconscious and unable to wake herself fully even when her eyes open - you’ll know what I mean. So if I could get in touch with someone who knows what they’re doing while she is actually in this state, I’d be so grateful. Gill. .(JavaScript must be enabled to view this email address)