Mike Jezdimir knows firsthand how hard it is to get appropriate medical treatment for his condition, a disease of the spinal cord called transverse myelitis. He has had it for 48 years, since he was 17. TM is fairly uncommon, and many physicians rarely encounter it. Treatment options are limited.
There were only two comprehensive clinics in the world for TM until the University of Alabama at Birmingham recently opened the third multidisciplinary, comprehensive clinic for transverse myelitis at UAB's Spain Rehabilitation Center.
Jezdimir is a patient at UAB and the creator of the Mike L. Jezdimir Transverse Myelitis Foundation, raising money for UAB TM research. Amie (Jackson) McClain, M.D., the chair of the UAB Department of Physical Medicine and Rehabilitation, directed him to Tara DeSilva, Ph.D., a scientist in the department who studies multiple sclerosis, a disease similar to TM.
Jezdimir sparked her research interest in transverse myelitis and connected her with the Transverse Myelitis Association, where conversations about the necessary components for a designated transverse myelitis clinic at UAB began.
"This is a game changer for those of us with transverse myelitis and for UAB," Jezdimir said.
The clinic joins two others — at Johns Hopkins University and the University of Texas Southwestern — as the only comprehensive clinics for treating TM. It will combine physicians and other medical professionals from multiple disciplines, including physical medicine and rehabilitation, neurology, neurosurgery, urology, and pain management, in caring for patients with TM, which can cause loss of motor function or paralysis.
"The mission of our multidisciplinary clinic is to provide the best care possible to patients living with transverse myelitis," said William Meador, M.D., assistant professor in the Department of Neurology. "We also combine excellent clinical care with research efforts to better understand and treat this illness."
The clinic offers immediate access to a number of rehabilitation specialists, such as physical, occupational and speech therapists, orthotic specialists, and many others. The clinic also serves as an educational tool to expose medical students and residents to transverse myelitis in a constructive and meaningful manner.
In the United States, up to 10,000 people will develop TM annually. Although it can affect people of all ages, it typically strikes people in their teens and early 20s, or in their 30s and 40s. About half of all TM patients experience significant recovery, but the other half have profound loss of motor skills or experience some level of paralysis.
"Those patients require a multifaceted approach, and the comprehensive nature of our clinic creates a synergy among the diverse branches of medicine involved, leading to outstanding medical care," McClain said. "The UAB TM clinic provides one-stop shopping, so each patient can see all the medical professionals who have a role in their care at one time and in one place. For patients with mobility issues, this is a tremendous benefit."
"We are blessed in Alabama to have an academic medical center such as UAB with the expertise and knowledge to provide the depth of care needed by patients with TM," Jezdimir said. "This is only the third clinic of its kind in the world, and the combination of outstanding patient care with UAB's robust research efforts gives me hope that new therapies, or even a cure, can someday be found."
UAB's transverse myelitis research efforts are spearheaded by DeSilva along with Chander Raman, Ph.D., a professor in the Division of Clinical Immunology and Rheumatology, and Hui Hu, Ph.D., associate professor in the Department of Microbiology.
Their collaboration seeks to understand how inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers.
"This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body," DeSilva said. "We will employ advanced imaging techniques and novel approaches in epigenetic research on immune cells to further our understanding of transverse myelitis. This information will help facilitate our pre-clinical studies in animal models to develop future clinical therapies."
The most common causes of TM are inflammation, infection and stroke, although in many cases the cause is never determined. Symptoms can vary greatly depending on which portions of the spinal cord are affected. The most common symptoms include numbness in the extremities, weakness of the legs or arms, loss of bladder and bowel control, inability to walk, and impaired balance.
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