i’m interested to know whether anybody actually knows anybody else with this condition and meets up (aside from on this forum)?
Of course, when it’s at its worst and you’re going through an acute phase, travelling is the last thing anybody wants to do.
I have a friend who may have this condition, but she lives 300 miles away, so we don’t get to compare notes very much, except by phone.
so - just wondering if you know of any meetings, or if anybody would like to meet to compare notes, sympathise, etc. it can be quite a frustrating condition because nobody else really understands what you are going through and they just raise their eyebrows when you try to explain the symptoms…
I’m not far from London (actually in Tunbridge Wells, where Dr Surenthiran has one of his clinics), and would be willing to meet or organise a meet-up if anybody is interested.
let me know!