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Journal of Pediatric Epilepsy 2020; 9(03): 094-096
DOI: 10.1055/s-0040-1714065
Original Article

Ethical, Social, and Economic Challenges in Managing a Child with Dravet Syndrome in a Developing Country

Sheffali Gulati
1   Division of Child Neurology, Department of Pediatrics, Center of Excellence & Advanced Research on Childhood Neurodevelopmental Disorders, All India Institute of Medical Sciences, New Delhi, India
,
Rahul Sinha
1   Division of Child Neurology, Department of Pediatrics, Center of Excellence & Advanced Research on Childhood Neurodevelopmental Disorders, All India Institute of Medical Sciences, New Delhi, India
,
Priyanka Madaan
2   Pediatric Neurology Unit, Department of Pediatrics, Postgraduate Institute of Medical Education & Research, Chandigarh, India
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Abstract

Epilepsy is a chronic neurological disorder with a significant impact on sociocultural and economic aspects. The management of epilepsy in low-middle income countries (LMICs) is influenced by many factors such as disease burden, poverty, educational status, the reflection of the disease as a social stigma, diverse religious beliefs, and treatment expense. Despite the improvement in educational and social parameters, the stigmatization of the disease is still evident in many LMICs. The associated comorbidities and neurodevelopmental disorders further add to the cost and stigmatization. The pediatric neurologists/epileptologists in LMICs are encountered by distinctive ethical, social, and economic dilemmas during the patient care and management of epilepsy. This article discusses the various ethical dilemmas in a child with Dravet syndrome in a developing country.

Keywords

ethical - Dravet syndrome - SCN1A - developing country

Authors' Contributions

P.M. and R.S. prepared the initial draft of the manuscript and reviewed the literature. S.G. conceptualized the study, took part in initial draft preparation, performed critical review of the manuscript and reviewed the literature, and also edited the final version of the manuscript. All the authors approved the final version of the manuscript.




Publication History

Received: 02 June 2020

Accepted: 02 June 2020

Article published online:
15 July 2020

© 2020. Thieme. All rights reserved.

Georg Thieme Verlag KG
Stuttgart · New York

 

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