Hi, I Have At Least 4 Of The Genetic Abnomalies

Hi,
I have at least 4 of the genetic abnomalies of vacterl plus Ehler's-Danlos syndrom. I have had nearly 50 reconstructive surgeries due to both problems...help!
What can I expect for the future? What sort of treatments are there? Is there anything that I can do to prevent more medical disasters?
Is there an adult support group? I read a lot about children's groups but nothing but nothing about adult support systems...