Care for Adults at the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute

NOVEMBER 7, 2014

Question: Does the Hunter Nelson Sturge-Weber Center see and care for adults with Sturge-Weber syndrome?

Response: Yes!

Sixty adults with Sturge-Weber syndrome between the ages of 18 and 67 have been evaluated at the Center. The Hunter Nelson Sturge-Weber Center is one of the few SWS centers worldwide that continues to see patients with SWS into adulthood. The clinicians at the center therefore have some of the greatest experience in the country, and in the world, with providing medical care for adult patients with Sturge-Weber syndrome. It is important that all adult patients have a good internal medicine or family practice physician we can coordinate care with. Or, if the patient lives at a distance from the center, then we provide consultative input to their adult specialists who continue to provide their ongoing care.

This practice of seeing patients into adulthood is a common model for many rare disorders where finding adult specialists with expertise in their syndrome is difficult. It provides continuity of care for patients, who would otherwise have to leave their expert care when they transition from pediatric to adult medical care. It also enables a clinician who has dedicated their career to improving the lives of their patients with a rare to disorder to continue to follow them into adulthood and beyond.

Adults with Sturge-Weber syndrome face a range of issues depending on the extent of their SWS involvement, symptoms, and situation. The Kennedy Krieger Institute has long championed efforts to aid the transition to adulthood, and has experts to tackle the many challenges faced by individuals with various neurologic and developmental conditions. The Hunter Nelson Sturge-Weber syndrome Center seeks to contribute in similar fashion to improving the lives or adults with Sturge-Weber syndrome. Some adults with Sturge-Weber syndrome have onset of new concerns such as seizures, stroke, glaucoma, early onset of dementia, sleep apnea or intracranial bleeds after previously being medically stable for many years.

For more information, please contact 443-923-9569.

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