At the Hunter Nelson Sturge-Weber Syndrome Center at the Kennedy Krieger Institute, patient’s visits are tailored to meet their individual needs.
In this way, the most relevant diagnostic testing can be performed to evaluate and most effectively treat each patient.
Clinical services are coordinated based on a patient’s individual needs. This allows for the most relevant diagnostic testing to be performed to effectively evaluate and treat each patient. Every effort is made to assist patients, their families, and referring physicians in the care of patients with SWS by providing education regarding the disease.
In addition to neurologic, ophthalmologic, and dermatologic diagnostic evaluations, the Hunter Nelson Sturge-Weber Center also provides services including EEG, neuroradiology, rehabilitative medicine, and neuropsychological evaluations.
All patients at the center are evaluated by Dr. Anne Comi, Neurologist and Director of the Hunter Nelson Sturge-Weber Center. Dr. Comi will typically spend between 90-120 minutes for new patient evaluations and between 60-90 minutes for follow-up evaluations. This allows for ample time to address all patient concerns, educate patients and families, answer questions, and determine what further tests, treatments, or evaluations are needed.
On the first Friday of every month, patients with SWS can receive high-level coordinated care by meeting with up to four providers within the same appointment day. These providers include SWS experts from both the Kennedy Krieger Institute and Johns Hopkins. See the chart below for more detailed information regarding multidisciplinary visits.
SWS Clinic Visit
Provider:
Dr. Comi (Director, Neurologist, Sturge-Weber Expert)
Visit type:
- Evaluation of patients at risk for or diagnosed with SWS
- Evaluation of patients at risk of developing or currently experiencing neurologic or developmental issues related to SWS
Where?
Kennedy Krieger Outpatient Center
When?
- Wednesdays: 9 am-12 pm, 1-5 pm
- Fridays: 10 am-2 pm
SWS Multi-Disciplinary Neurologic Visits
Providers:
- Dr. Comi (Neurologist)
- Dr. Stacy Suskauer (Medical Rehabilitation)
- Dr. T. Andrew Zabel (Neuropsychologist)
- OT/PT Therapists
Visit type:
Coordinated SWS visits with Kennedy Krieger SWS experts
Where?
Kenney Krieger Outpatient Center
When?
1st Friday of Every Month
SWS Multi-Disciplinary Medical Visits
Providers:
- Dr. Comi (Neurologist)
- Dr. Courtney Kraus (Glaucoma Specialist)
- Dr. Nara Sobreira (Genetics)
- Dr. Anna Grossberg (Vascular Dermatologist)
Coordinated SWS visits with Kennedy Krieger and Johns Hopkins experts for out-of-state patients as needed
Where?
Kennedy Krieger and Johns Hopkins Broadway Campus
When?
Wednesdays-Fridays
SWS Multi-Disciplinary Epilepsy Pre-Surgical Visits
Providers:
- Dr. Comi (Neurologist)
- Dr. Ahmad Marashly (Epileptologist)
- For patients with SWS and medically-refractory epilepsy
- Education regarding surgical options
Where?
Kennedy Krieger Outpatient Center
When?
2nd Friday of Every Month
Chart Reviews:
The Hunter Nelson Sturge-Weber center can provide expertise and personalized care to patients who cannot travel to Baltimore through a chart review. This process entails sending medical records, neuroimaging, photographs, and pertinent questions to our office, where Dr. Comi will conduct a thorough review and provide feedback and guidance for patient’s care. If you are interested, please contact Sturgeweber@KennedyKrieger.org.
Telehealth Services:
Dr. Comi is a member of the Interstate Medical Licensure Compact (IMLCC) and offers telehealth services for patients with Sturge-Weber syndrome in Nevada, Minnesota, Tennessee, and Maryland. Dr. Comi is also able to provide care to international patients through telemedicine offerings. For more information, please call (443) 923-9569 or (443) 923-9127, or request an appointment online.
Planning Your Visit:
If you are interested in visiting the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute, you may have questions about the services that we offer and the experience of the visit itself. We hope that the following information will help you make decisions about your center visit.
Contact us to schedule an appointment to see any of our staff members or with any additional questions you may have about visiting the Hunter Nelson Sturge-Weber Center.