I don't know if this is of any help, but our youngest son has joint hypermobility EDS. I agree with other posts that you should look at the EDS Society website. I believe there is a website out of the UK as well. Our son was diagnosed at a genetics center based on physical criteria when he was checked for Marfans and other connective tissue disorders. However, I don't think the gene has yet been found as one of the subvariants. Their is a research lab at MUSC in Charleston that is trying to locate the gene for the hypermobility subvariant. As far as I know, MUSC was also planning to create an EDS clinic but I don't know the status. In addition, I believe there is a physician in Silver Springs Maryland who specializes in EDS as well as one in the Denver area. Perhaps the EDS Society could point the way. However, these physicians have long waiting lists. I think a rheumatologist who is familiar with EDS would be your best bet for advice on the hip surgery. I also understand that physical therapy could be of some benefit. All the best to you.