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November 12, 1997

Physiatry and Care of Patients With Neurofibromatosis

Author Affiliations

Ohio State University Medical Center Columbus

JAMA. 1997;278(18):1493-1494. doi:10.1001/jama.1997.03550180043031

To the Editor.  —In their overview of neurofibromatosis, Dr Gutmann and colleagues1 present "a comprehensive approach to the diagnosis and treatment of individuals with neurofibromatosis 1 [NF1] and neurofibromatosis 2." Unfortunately, the physiatric perspective was omitted in their plan of care. We write from the perspective of a neurologist with NF1 and her physiatrist.

Dr Levy's Perspective.  —I have followed Dr Krietemeyer since she was a neurology resident facing increasing difficulties with ambulation and fatigue. Neurofibromas have encased virtually every spinal nerve root. Over 3 years I have prescribed ankle-foot-orthoses, canes, rollator walkers, and physical therapy to enable ambulation, and a scooter and later a powered wheelchair to conserve energy. The Ohio Bureau of Vocational Rehabilitation was enlisted, resulting in a van with a wheelchair lift and hand controls. Work site modifications (powered exam tables, powered doors) are now being pursued. Adjustment issues have also been addressed. As a