Founder trustee & Chairman of Epilepsy Foundation, India
Title: Epilepsy and Disability- Unknown Devil
Dr. Nirmal Surya, MBBS, MD , DNB (Neurology), FIAN , working as Hon. Ass. Consultant Neurologist at Bombay Hospital and research Centre, Saifee Hospital and Mumbai. Chairman of Surya Neurocentre, Mumbai. I am the Founder Trustee and Chairman of Epilepsy Foundation India(2009 onwards). I have been at various posts for neurological societies in India, Founder President of Indian Federation of Neurorehabilitation, Past President (2013-14) of BNA- Bombay Neuroscience Association, Treasurer(2014-2020) IAN- Indian Academy of Neurology, Founder Secretary (2005-10) MAN- Maharashtra Association of Neurology. I am the Regional Vice President of World Federation for NeuroRehabilitation (Since 2006) Chairperson, Developing world Forum, SIG, WFNR and president of the recently concluded 10th World Congress of Neurorehabilitation in Mumbai.
Epilepsy is a major public health concern affecting an estimated 50 million people worldwide. Developing countries are the one most affected by the consequences of epilepsy, with treatment gap of over 60%. The life time prevalence rate for epilepsy in developing countries varies from 1.5 - 14 per 1000 in Asia. to 5.1 - 57.0 per 1000 in Latin America and 5.2 - 74.4 per 1000 in sub Sahara Africa. The increased occurrence of birth trauma, traumatic head injury and neuro-infection are responsible for higher prevalence of epilepsy. Approximately 30% patient with epilepsy have significant neurological co-morbidity (ID, CP, Autism, ADHD, Stroke, Head injury and Encephalitis. In developing world epilepsy is associated with many disability particularly in children, in Children with Epilepsy 30 - 40% have ID and 7 - 42% with autism. In population based study 38% of children with CP has epilepsy. ADHD, ASD are more common with epilepsy. The more serious the neurological co-morbidity, higher the incidence of epilepsy, each disability needs to be addressed separately besides the disability related to epilepsy itself.
Epilepsy is often misunderstood, leading to fear, stigmatization and the risk of social discrimination. In some patients, social stigma can pose a greater challenge than the epilepsy itself. People with epilepsy have an increased risk of poor self-esteem, depression, and suicide. Many people with epilepsy live in fear that they will have another seizure. Our experience of epilepsy and disability during the epilepsy camp in Maharashtra with NHM Govt. of Maharashtra in past 7 years has been as follows: In 69 camps from 2011-2018 the total no. of patient with epilepsy are 26606, No. of patients evaluated by the Physiotherapist: 1724, Speech Therapist: 2574, Occupational Therapist: 2724 and Clinical Psychologist: 1896. I shall be discussing our experience and highlight the need of recognizing this hidden devil in people with epilepsy.