Reasons to Refer Patients to the Hunter Nelson Sturge-Weber Center at Kennedy Krieger:
 

  1. Newborn or infant with a port-wine birthmark on the forehead, temple or upper eye(s) who needs an evaluation for possible SWS brain and eye involvement. It is very important that these patients be seen early so that brain and eye involvement can be diagnosed early and treated appropriately (including presymptomatic treatment where are appropriate).
     
  2. Infant or child with Sturge-Weber syndrome and recent onset of symptoms: Including seizures or stroke, or developmental or visual concerns. These families are often overwhelmed with many questions and concerns and our expert care can provide the reassurance needed at this time of crisis.
     
  3. Patient (both children and adults) with Sturge-Weber syndrome and:
    • Epilepsy and/or stroke-like episodes
    •  migraines or headaches
    • ADHD, cognitive and learning issues including reading and math disabilities
    • growth problems
    • motor and difficulties
    • social impairments or autism
    • mood or behavioral issues
    • Visual impairments or glaucoma
    • A port-wine birthmark

      We have developed expertise over the past 20 years in all of these areas and can provide comprehensive evaluations and care for patients and their families.
       
  4. Patient and family are interested in participating in clinical research or drug trials. We have studies ongoing at all times and intermittently have clinical trials which are recruiting.   

Our center features an interdisciplinary team consisting of a neurologist (Dr. Anne Comi, Director), epileptologist, (Dr. Eric Kossoff), glaucoma specialist (Dr. Henry Jampel), vascular dermatologist (Dr. Bernard Cohen), medical rehabilitation specialist (Dr. Stacy Suskauer) and neuropsychologist (Dr. Andy Zabel) who have been working together for the past 15+ years in the care of patients with SWS.

Together, they will:

  • Provide anticipatory guidance and be an emergency resource where desired
  • Take the time to answer parent questions, address concerns, and provide educational materials
  • Guide timing of appropriate workup
  • Distinguish between SWS and other similar syndromes and do genetic evaluations where appropriate
  • Guide presymptomatic and symptomatic treatment where appropriate
  • Provide multi-disciplinary, integrated plans for patient care
  • Provide access to state-of-the art diagnostic evaluations, and surgical and medical therapies

All patients seen at the center are evaluated by the director, Dr. Anne Comi, who will typically spend between 90-120 minutes with new SWS evaluations and 60-90 minutes for follow-up evaluations. This provides plenty of time to address all concerns, educate patients and families, answer questions, and determine what other tests, treatments or evaluations are needed. We offer services on a consultative basis for patients living outside this region.

 

Additional Information:

To learn more about the services we provide and how to make an appointment, please contact us.