Sturge-Weber Syndrome: The importance of comprehensive care in assisting adolescent patients

Abstract

Objectives: To describe the experience of nursing students during the care of adolescents with Sturge-Weber Syndrome and the importance of comprehensive care. Method: This is a descriptive, exploratory research, with a qualitative approach, of the type of experience report, carried out in a School Clinic in the Mountain Region of the State of Rio de Janeiro, in the month of June 2019. Result: BHV, 13 years old, male, attending 4th year of elementary school, with Sturge Weber Syndrome, mentions that he had not been to a health service and routine exams for a long time. It had a "spot on the face", characteristic of the syndrome. He has glaucoma and uses Phenobarbital due to the seizure. He is afraid because of "the stain on his face". The data indicate the need for comprehensive care. Discourse: As it is a rare disease, the need for comprehensive care is evident, due to neurological, cutaneous, ocular and oral manifestations. Our conduct allowed us to return to ophthalmic care, dental follow-up, clinical and neurological evaluation. Final considerations: It was possible to realize that in order to achieve quality in comprehensive care in the care of adolescents with a rare syndrome, such as that of Sturge-Weber, the involvement of a multidisciplinary team is extremely important.