A Project Bridge Event on Multiple Sclerosis and the Role of Patient Empowerment
Here on campus, Project Bridge is a student organization that aims to bridge the gap between biomedical science and the general public. On April 16th, Project Bridge sponsored a Science Café event about multiple sclerosis (MS). MS is a disease that involves the central nervous system and results in damage to the myelin sheaths that cover nerves. This damage results in common early disease symptoms, such as numbness, weakness, tingling and problems with vision. However, the disease course is variable, with some who are more severely affected than others.
This event was held at Red Emma’s and featured a talk by Nicoline Schiess, M.D., M.P.H., an assistant professor of neurology at Johns Hopkins. Currently, Schiess spends part of the year in the United Arab Emirates (UAE), where her research focuses on the prevalence of MS in the Middle East. MS affects more than 2.3 million people worldwide. Previous studies had shown that it was more prevalent in northern latitudes and less prevalent in the Middle East and Africa. However, such statistics could be confounded by a bias in diagnosis.
MS is diagnosed by a combination of the patient’s clinical history, a neurological exam and an MRI. Yet because MRIs are not as readily available in the Middle East as they are in the U.S., the number of people affected by MS in the Middle East could be underestimated. To address this, Schiess began an MS clinic in Dubai, and preliminary work has found a higher-than-expected number of patients with MS.
Beyond the difficulties with diagnosis, UAE patients have another hurdle they must overcome: a lack of resources that promote “patient empowerment.” According to Schiess, though there are similarities between her UAE patients and their U.S. counterparts—including MRI findings, disease symptoms and challenges associated with living their daily lives—a key difference is that “patients in the U.S. are empowered with knowledge.” They tend to be well-educated about their disease and proactively seek resources to manage the disease effects.
This empowerment is partially a product of patient-initiated foundations, such as the National Multiple Sclerosis Society, as well as many other smaller local and national groups. These groups provide educational resources for patients and their families, organize support networks, and fund both basic science and clinical research. In contrast, patients in the UAE have a harder time because of a lack of these resources and a continuing stigma associated with disability. However, the situation is improving.
As the event concluded, I felt I had learned more about MS, particularly outside of the U.S., and had an increased appreciation for how patient-centered groups can help empower patients with MS and their families.