Transverse Myelitis: A Rare Disorder, Ripe for Research
Date: September 1, 2007
Clinicians and investigators join forces and take on transverse myelitis
Its symptoms seem to know no bounds: Pain in the lower back, chest or neck. Legs that are numb. Hands that tingle. Headache. Fever. Loss of appetite. A general malaise. They can develop over a period of several weeks, hours—or, as one young woman Cody Unser recalls, even minutes.
“I was 12 years old. I was playing on the basketball court. Out of nowhere I had a hard time catching my breath, and I had a really big migraine. This all happened within the span of 20 minutes. They laid me down in the locker room. My left leg went numb. My right leg was tingling. And that was the last time I ever walked.”
Unser was diagnosed with transverse myelitis, a rare neurological disorder caused by inflammation of the spinal cord that can leave victims permanently dsabled. Now 20, Unser is paraplegic, but leads an active life. The daughter of retired racecar driver Al Unser Jr., she runs her own foundation, advocates for stem cell research, and takes part in fundraising for The Johns Hopkins Transverse Myelitis Center and Project RESTORE.
TM is one of a group of disorders in which the immune system becomes abnormally activated and attacks the nervous system. The attack can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers, interrupting communications between the nerves in the spinal cord and the rest of the body.
TM is rare—only about 1,400 cases are diagnosed in the United States each year. But because it is “monofocal,” meaning it affects just one region of the central nervous system, and “monophasic,” meaning the attack occurs just once, it lends itself particularly well to the study of novel neuro-protective and -restorative therapies.
Faculty and staff at Hopkins’ TM Center, the only clinical and research enterprise of its type in the world, are dramatically improving the treatments and care of TM patients. “Aggressive treatment during the first three months is critical for better recovery,” says Douglas Kerr, the clinician scientist who directs the TM Center.
Kerr is testing two potentially effective treatments: the blood hormone erythropoietin and the anti-inflammatory drug thalidomide. A clinical trial of erythropoietin now is enrolling participants. A trial of thalidomide is planned for the near future.