What Is Syringomyelia?
I received a spinal fracture in my lower back in 1964. My spine continued to deteriorate, I could not find a doctor to diagnose my problems. In 1985 I was finally diagnosed with Syringomyelia. It was considered a rare disorder at that time. I contacted NORD, the National Organization for Rare Disorders that year. I was told by them they knew of a person living in Texas who also had Syringomyelia.
NORD suggested someone start a support group for people with the disorder and also start educating people and the medical society about this rare spinal condition. Barbara White and I exchanged letters and ideas. She agreed to start a support group with her husband Don at that time. After that first memorable, year there was an annual meeting held in Colorado, Springs Colorado. The number of people attending was large after just one year.
I’m attaching some pictures from that first ASAP meeting and also the URL address for ASAP. Click on the link below to find out more information about Syringomyelia or ‘SM’. I thank ASAP for being a great support group and an outlet for the most up-to-date information about spinal disorders also for outstanding fundraising for SCI research.