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Epilepsy affects the everyday lives of individuals andtheir families in multifaceted ways, and the challenges associatedwith this chronic disease are increased when it is notappropriately treated. The conditions are worse in developingcountries such as India, where resources are few and ignorance andmisconceptions about the disease prevail. Although there are nogender-based differences in the mechanisms through which thedisease affects people, women in India with epilepsy suffer morethan men. Little is known about the experiences of women livingwith epilepsy and its treatment gap in India. The phenomenonreferred to as the epilepsy treatment gap is the number of peoplein a given population (expressed in percentage) who requiretreatment but do not receive it at a given point in time. Thus, thepurpose of this qualitative descriptive study was to describe thelives of women living with epilepsy in the outskirts of Kozhikodedistrict in the Malabar Coast of Kerala, South India, where theepilepsy treatment gap is extensive. The study examined (a) thecustoms, traditions, and beliefs of the Indian women who are livingwith seizures, (b) how these women actually live their lives day inand day out; and ( c ) their thoughts and perceptions about theirseizures. Six participants (ages 20-63) who were recruited throughpurposive and snowball sampling completed the study. Data that werecollected through in-depth semi-structured interviews and fieldnotes were analyzed using thematic analysis to understand meaningof these participants’ experience of living with epilepsy. Thethemes that emerged from the analysis included: (a) Amulets,“English” medicine and traditional medicine; (b) “money is tight”;( c ) scarring and stigmatization; (d) “adjust accordingly andlive”; (e) “have to suffer”; and (f) “live my life.” The findingsof this study could lay the foundation for future qualitative andquantitative research studies and for developing culturallyappropriate interventions.

Lives of Women with Seizures in Malabar, South India