What We Fail to See in Neuro-Genetic Diseases: A Bird’s Eye View from the Developing World

Abstract

Background: Progressive neurological genetic diseases are not rare. They cause psychosocial damages to its victims. This article focuses on common psychosocial issues faced by those from the developing world. Methods: A multicentre observational survey of 246 patients from teaching hospitals in Sri Lanka. Participants were clinically and genetically confirmed by neurologists and the Interdisciplinary Centre for Innovation in Biotechnology and Neuroscience (ICIBN) respectively from 2014 to 2018. Convenience sample with random geographical distribution. Factors were equally weighted. ANOVA, Student’s t-test and chi-square analysis were used. Statistical Software R Statistics—version 3.5 and one-sample t-test with CI = 95% was used. This study meets the ethical guidelines of the local institutional review boards which are in compliance with the Helsinki Declaration. Results: Sample included 184 males and 62 females of 3–76 years with either Duchenne muscular dystrophy (n=121), spinocerebellar ataxia ( n = 87) or Huntington disease ( n = 38). Mean income of the affected is lower than the standard average monthly income ( P ≤ .001). Consultation visits depend on the monthly income (CI 20421.074–34709.361; P ≤ .001). Conclusion: Poverty is inversely proportionate to the patients’ living conditions. As developing countries are financially challenged, it is a societal challenge to rebuild our values to enhance their living status.