Unfortunately, no one can predict how bad any particular case is going to get, our bodies are unpredictable, to say the least! However, you should be given either referrals or suggestions for treatment and/or therapies that can help to improve your condition, and hopefully prevent things deteriorating too much. There are tings that can help, but sometimes we struggle to accces them, or to fit them in with the demands of our lives.
Hope your appointment goes well
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!