I have had this (AS) for a good 40 years, after a traumatic road accident in my childhood, I was sidelined for everything, but got no help because I did NOT HAVE A DISEASE I WAS NOT DIAGNOSED with anything. Powers that be did not offer me anything. I put up with pains, they looked at me, shrugged and could not help. This condition appears to be grossly underdiagnosed, and it was only by chance that I got diagnosed. I had severe back pain, but had not recently hurt myself, so had xrays, and I insisted I see a specialist. Since this disease takes decades to develop to the point where they can diagnose it, I finally was diagnosed!! Not crazy after all! Wow, now I can get treated. Not so fast - the Health board would not pay for me to see a specialist, so I had to pay to get my diagnosis. Now I know what I am dealing with what a relief; but they won't pay for a rhueumatologist, so I'm paying to see one of those. We pay for health service, but it is selective in who it will help.