Abstracts

Individuals with epilepsy always seek to know more about their condition. Parents of children with epilepsy and young people with epilepsy want to know if their condition is likely to remit or worsen. Young adults eventually become concerned about the possible hereditary impact epilepsy may have upon future offspring. In this study an individual with epilepsy, without training in genetics or medical research, endeavored to identify all family members with epilepsy. The index subject, an American female of Irish Catholic descent, identified herself. She was aware that epilepsy ran in her family. She subsequently researched the family history of epilepsy by interviewing living relatives. The fact that epilepsy occurred in multiple generations was found when the subject began exploring her family history. The index subject trained herself in genealogical research by following the recommendations of others who had done the same, as well as reviewing multiple records relevant to her family tree. Oral histories provided most of the information. All research was done in the US. Genealogic research identified 5 generations with epilepsy in this family. Epilepsy could be traced back to the index subject[apos]s paternal grandparents (generation 1 G1). Epilepsy was clearly traced to the paternal grandfather[apos]s maternal family, although the grandmother seemed to have more knowledge than expected for seizure disorders. Grandparents were from the same county in Ireland but not cconsanguineous. They may have been denied immigration to the US by disclosing an illness such as epilepsy; however, neither were never known to have seizures.
In the 2nd generation (G2) 1of 8 and 7 of 26 in generation 3 (G3) had seizures. All individuals but one in G2 married subjects of Irish heritage. All G3 subjects married non-Irish. In G4, 1of 45 had seizures. Of 9 G5 subjects, none have yet to develop seizures. While absence seizures were reported, the primary seizure type is tonic-clonic, with typical onset at age 8 and no onset later than 15. Epilepsy is mild; some individuals outgrew epilepsy. This research also identified three 2nd cousins; one each for G2, G3 [amp] G4 with epilepsy, linking epilepsy to the paternal grandfather. It also identified one 3rd cousin in G3, via the same family line, to have epilepsy. Extraordinary effort by a subject with epilepsy identified 13 individuals with epilepsy. The individuals of G3 are now parents and grandparents. They possess specific knowledge of the epilepsy that exists in their kindred and will be able to share this with G4 as they become parents, and G5 as they mature.
The use of extended family interviews can add to the understanding of genetic forms of epilepsy.