May 2008 - Epilepsy Australia

Letters to theEditorAustralia 2020 Summit:no vision for people with epilepsy.On the weekend of 19 and 20 April 2008, one thousandpeople will gather in Canberra to contribute their views onthe future of Australia to public policy development by thenew Federal Government. The stream to discuss a long termnational health strategy contains many well-known namesin the health area, particularly those associated with ageing,disabilities, indigenous health, general practice and healthpromotion. There are also people well-known for their viewson reform of the health system. As well, there is at least oneelite sportsperson. His presence, it was explained was thatsport would play a role in the future to address the ‘obesityepidemic’ and its associated ‘lifestyle diseases’ of Type 2Diabetes, heart disease, cancers and musculoskeletal problems.There is no clearer an example of the continuingmarginalisation of people whose chronic diseases are notlife-style related, including people with Type 1 diabetes, cysticfibrosis, multiple sclerosis, thalassaemia, Crohn’s and colitisand of course, epilepsy.Recent research on the personal impact of epilepsydemonstrated that most people with epilepsy felt marginalisedbecause of their epilepsy by the wider community. Peoplewith epilepsy found it difficult to obtain employment, felt theirmobility problems were widely misunderstood, and were oftensocially isolated because many members of the communitydid not like to associate with people with epilepsy. Ironically,one of the outstanding examples of social exclusion camefrom rural people with epilepsy, who found they were oftenexcluded from participating in local sports activities, eventhough they felt up to the task. The language the participantsin this study used to describe their plight was the languageof social exclusion. They were ‘left out’, ‘avoided’, ‘shunned’and were social pariahs. These participants wanted to activelyaddress these problems; they were not passive victims and theycalled for campaigns on community awareness to dispel someof the community myths around epilepsy so they could take agreater role in their communities.The Chronic Illness Alliance has argued on behalf of allpeople with chronic illnesses that the impact of illness cannotbe managed by health care alone. Policy needs to include afocus on employment opportunities, income and relationships.It also needs to consider health reforms that deliver affordablemedicines, aids and equipment and affordable health care.The current composition of the Australia 2020 healthstream is unlikely to present an integrated framework of theseconcerns because of its focus on health promotion in ‘lifestyle’illnesses and because there are too few people there to promotethe needs of a substantial number of Australians with chronicillnesses that cannot be prevented through exercise and diet.If people with epilepsy as well as other people with seriouschronic illnesses that are not amenable to behavioural change,are to receive any benefits from new public policy includingthat of social inclusion, their voices must be represented in thediscussions that will drive those policy developments.Christine WalkerChronic Illness Alliance[Christine was unsuccessful in her nomination to Australia2020.]&seizuresepilepsyanswering your frequentlyasked questions&seizureFIRST AIDSeizures &EpilepsyDeveloped and published byEpilepsy Australia, Seizures &Epilepsy answers many of theconcerns raised at diagnosis.20 pp. DL sizeA free community educationresource.Available from your EpilepsyAustralia affiliate or emailepilepsy@epilepsyaustralia.net.Amazing numbers100 billion: the number of neurons inthe human brain. Additional supporting tissuebrings the total cell count to 1 trillion125 million: the number of visual receptors ineach eye6000: the number of genes out of a total of 30,000in humans that are expressed only in the brain.750 millilitres: the amount of blood flow throughthe brain every minute; when parts of the brain areactive, their blood supply increases.12: the number of major nerves that carry sensoryor motor signals to and from the brain100% of our brain that we use. It’s a longdiscreditedmyth that we take advantage of only10%75% of the brain that consists of water - roughlyproportional to a banana or the surface of the earth2% the weight of the brain proportional to that ofthe adult body30 THE EPILEPSY REPORT MAY 2008