Dana’s family attended the first-ever Pediatric Transverse Myelitis (TM) Workshop in Columbus, OH at the end of July 2002. The Workshop was sponsored by the Transverse Myelitis Association (TMA). They met 22 other families who had children with the illness. Dana is much less affected than many of these other children. TM is such a rare disease (one in a million) that it is often misdiagnosed or there is a delay in diagnosis – with dire consequences for the patient. Dana’s parents are both physicians and are concerned that there were perhaps missed opportunities for better outcomes due to lack of awareness by treating medical personnel. Dana was fortunate to have been treated promptly and continues to have coordinated and knowledgeable rehabilitation services available to her.
There is only one center for the study of TM in the US - the Johns Hopkins Transverse Myelopathy Center (
www.hopkinsmedicine.org/jhtmc/), chaired by Douglas Kerr, M.D., a neurologist. He monitored the workshop in Ohio, and parents were able to ask anything and everything of Dr. Kerr and of the sub-specialty physicians attending whose disciplines are often involved in the care of TM patients. Dana’s parents were amazed to find that every physician on the medical board, counselor, and officer of the TMA are volunteering their time and services to help educate patients and physicians.TM is an "orphan" disease because so few people have it. This means there is no research or support money provided by the federal or state governments. The TMA (
www.myelitis.org) publishes a biannual newsletter to members containing articles written by its medical board and recently published articles on TM in the medical literature. Although there is no overhead, the costs to maintain the association are high and the only monies available come from individual contributions. Dana’s parents, as physicians, believe it is important to help raise funds to sustain the TMA and help with the education process.