Briefly, had no clue so many communities were out here- not an ’ internet ’ follower of much. We’re history/science buffs although I’m an artist by trade, go figure!
We’re also an EDS family, hypermobile although in PA, there’s only one doc ( who we JUST found )who listens to kids. Mine trailed RA along, been swearing at that for 20, never really looked at sites about it. Son’s EDS has been a big problem, as far as treatment neurologically. His headaches are what led me here- hoping to find some information and also tempt him to come look around and meet other people. He’s been fairly isolated. ” EDS? Was he diagnosed? Where? By whom? “
Sorry to take up bio with this medical paragraph- it feels like getting treatment so he can send dirty laundry home from college, like his 3 siblings, is who we’ve become.