Hi SandiV, I can relate to this situation. It just takes someone willing to volunteer.
There had not been a group in Los Angeles for many years until I started it back up in 2012. I highly recommend starting a group if you are at all able to do that. I'm happy to talk to you about my experience in LA. For me, there is no substitute for meeting people in person.
my social network rant:
Some people are not comfortable publicly talking about their disease in social media like FaceBook. it can affect employment, and I understand things like life and disability insurance, etc. Plus the information there is sometimes really, really off. I have to wonder how private companies are monetizing their chat rooms. They are selling information or access. I do like these Forums because the people are supportive and knowledgeable. The forums are supported by donations to SAA. These forums are as anonymous as people set up their name and information. My favorite feature is the search bar that I can find almost any issue discussed.
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.