Annah is right, EDS hypermobility type and HMS are thought of as the same condition by the experts. EDS-H/HMS is somewtimes refeered to as a diagnosis of exclusion because there is no specific laboratory test for it. For other types of EDS there are genetic tests that can be done, but not for the hypermobility type. They usually will only refer for this kind of testing, or skin biopsies, if you show symptoms of the other types. There are, however, the major and minor diagnostic criteria that Anna has referred to.
We are often told that our condition will improve with age, but this tends to be mre about hypermobility than HMS. As we get older our ligaments, joints etc stiffen and so the hypermobility is limited, but this does nothing to help any damage that has already occurred, or any problems with other body symptoms. Flat feet will not suddenly develop arches, or speines straighten themsleves, even if they do stop getting any worse.
It is also common for us to find medics who say they know about HMS, but do not understand the full implications of the condition, or only really understand about hypermobility. It is quite rare to foind an orthotic consultant who recognises HMS/EDS-H but they do exist, my daughter was referred to Stanmore for her scoliosis because the consultant there knows about EDS causing scoliosis.
If you have already been refused a referral to UCLH, it is hard to see how your GP caould refer you to one of the specialist HMS clinics (listed on the main website) but you could appeal.
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!