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I just got back from an Epilepsy Awareness Walk challenge which took me 12 days on the road from Nairobi to Mombasa on foot…crazy huh! Yeah…I got much of such looks on people’s face especially those that were following my journey on all media platforms. I learnt and made discovery of so many things surrounding Epilepsy believes and perspectives from people I met and had conversations with during the walk.
A wider approach to Psychosocial aspects of Epilepsy as published on BJPsych Open Research paper in 2016 August 17th highlights Epilepsy as one of the most serious neurological conditions and has an impact not only on the affected individual but also on the family and, indirectly, on the community. A global approach to the individual must take into account cognitive problems, psychiatric comorbidities and all psychosocial complications that often accompany epilepsy. Social barriers to optimal care and health outcomes for people with epilepsy result in huge disparities, and the public health system needs to invest in awareness programmes to increase public knowledge and reduce stigma in order to minimise such disparities.
Social attitudes towards epilepsy cause more distress to the patient and his/her near and dear ones, than the disease itself. The major psychosocial issues related to epilepsy are: Quality of medical management, overprotection, education, employment, marriage and pregnancy. Inadequate treatment is the major reason involved in psychosocial issues. Constant over protection and pampering leads to behavioral pattern which makes epileptic patient dependent forever. Education is hampered in epileptic persons. Teachers and students should have proper information regarding seizures.
If seizures are well controlled, job opportunities increase. Employers and employees need to be educated about epilepsy. Self-employment is the best in epileptic patients. Regarding marriage, each patient is to be judged on individual merits and type of epilepsy. Society needs to be educated about the facts and consequences of epilepsy. Risk of anti-epileptic drug's usage is very insignificant compared to risk of seizures in pregnancy. So girls are advised to seek medical advice before pregnancy and during follow-up. With more and more support from the society, persons with epilepsy will have the courage and confidence to speak about themselves and their illness. It is only then that we will realize that persons with epilepsy are 'normal' or 'near-normal' and this will break the vicious cycle of stigma.