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News & Updates
Resource Finder at Kennedy Krieger Institute
A free resource that provides access to information and support for individuals and families living with developmental disabilities.
Sturge-Weber Syndrome Center Offers Nation's Leading Treatment Approach For Children With Complex Disease
(Baltimore, MD) - The Hunter Nelson Sturge Weber Center at the Kennedy Krieger Institute introduces a multidisciplinary team of specialists to children with this rare and debilitating disease. Directed by Dr. Anne Comi, the Center's unique combination of faculty, including specialists in neurology, epileptology, ophthalmology, dermatology, neuroradiology, rehabilitative medicine, endocrinology and psychiatry, is vital for researching and treating a disease that affects multiple bodily systems.
Sturge-Weber Syndrome (SWS) is characterized by a congenital facial birthmark, or "port wine stain," in association with abnormal vessels on the surface of the brain, glaucoma or both. Seizures are the most common symptom, beginning often in infancy. Other manifestations that may occur in varying degrees include a weakening or loss of the use of one side of the body (hemiparesis), vision impairments and delays in motor and cognitive skill development. Approximately three in 1,000 children are born with port wine stains, commonly located on the upper part of the face. Of this group, roughly one in five will develop SWS.
"We're calling it the Hunter Nelson Sturge Weber Center which provides a multidisciplinary approach to both the research and treatment of the disease," said Dr. Gary Goldstein, President and Chief Executive Officer of the Kennedy Krieger Institute. "Parents of children with the disorder no longer have to make visits to multiple centers and specialists for diagnosis and treatment. Researchers in various disciplines are working together, ideally resulting in more meaningful research and better clinical outcomes for patients."
The faculty at the Sturge-Weber Syndrome Center for Excellence is presently involved in a number of clinical trials with the goal of establishing methods for early detection. SWS often goes undiagnosed until seizures or other harmful symptoms develop, resulting in brain damage. Future early detection will allow physicians and parents to develop plans to prevent brain injury in the event of a seizure or other harmful symptoms.
Currently, research scientists at the Center are seeking to determine whether quantitative electroencephalogram (qEEG) technology is a useful tool for early detection of SWS. Traditional neuroimaging screening methods, including magnetic resonance imaging (MRI), require sedation of infants and thus carry a small, but significant, mortality risk. Additionally, these methods often yield false negatives in asymptomatic infants with SWS. If proven effective, the qEEG technology will represent a low-risk diagnostic tool that will provide answers to families of infants with the signifying port wine stains before their symptoms develop. Once improved diagnostic methods are standardized, the next research frontier will be the development of treatments to prevent the onset of symptoms.
About the Kennedy Krieger Institute
Internationally recognized for improving the lives of children with disorders and injuries of the brain and spinal cord, Kennedy Krieger Institute in Baltimore, MD serves more than 12,000 children each year through inpatient and day treatment programs, outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop and pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit www.kennedykrieger.org.