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Indian Journal of Legal Medicine

Volume  5, Issue 1, January – June 2024, Pages 79-86
 

Case Report

An Orphan Disease Begets an Orphan Judgment

Vivekanshu Verma1, Shri Gopal Kabra

1Associate Consultant, Medanta -   The Medicity, Gurugram 122001, Haryana, 2Director Legal
Affairs and Medical Audit, Santokba Durlabhji Memorial  Hospital, Jaipur 302015, Rajasthan, India.
 

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Abstract

An orphan disease is characterized by its rarity, leading to a lack of interest from   pharmaceutical industries and medical researchers due to limited financial viability.  Consequently, the etiopathology and causative agents of such diseases remain unidentified, and specific drug therapies are unavailable. Treatment relies on the clinical experience and  intuition of individual physicians, with no standardized protocol or sufficient patient data for  validation. Toxic Epidermal Necrolysis (TEN) is one such orphan disease, with an incidence of  1 to 1.5 per million. It often results from severe hypersensitivity reactions to drugs or infections,  causing the immune system to destroy the epidermal layer, leading to multiorgan failure and a  high mortality rate. This case highlights the complexities and controversies in managing TEN.  Despite numerous specialists' involvement, her treatment led to a legal battle, culminating in a significant compensation award due to alleged medical negligence.
 


Keywords : Negligence; Malpractice; Court; Hospital; Orphan disease; Adverse Drug Reaction; TEN; SJS; Medico-legal.
Corresponding Author : Shri Gopal Kabra