Submitted by Linda McGlone
Ground-breaking medicinal cannabis and epilepsy website helps Australians living with epilepsy make informed decisions.
A new website aims to help thousands of Australians living with epilepsy, particularly those with devastating medication resistant types, make informed choices when it comes to medicinal cannabis. Launched by Epilepsy Action Australia, the leading provider of epilepsy support and information nationwide, C4E.com.au is the first evidence-based website to provide the latest published research from Australia and around the world, tools, fact sheets, videos, life stories and other resources related to medicinal cannabis and epilepsy.
“While research continues globally, many children and their families live with intractable or medication resistant epilepsy. There are also many adults who have lived for many years with unrelenting seizures that have made it virtually impossible for them to lead a quality life and participate fully in their communities,” says Carol Ireland, CEO of Epilepsy Action Australia. “While some have been able to access medicinal cannabis, many others are still hoping for answers and relief from seizures.”
“Medicinal cannabis can be life-changing but it is not a ‘silver bullet’ and it is not advisable for people or carers to consult ‘Doctor Google’ for something so important. Research is constantly evolving and, like any medicine, the right dose, the right quality and the right treatment plan are essential to success,” continued Ms Ireland.
“As with any ‘new’ protocol, significant research is required prior to a solution being prescribed by the broader medical governing bodies. Ultimately what we are aiming to do with C4E.com.au is to arm people and carers with trusted, up to date information to discuss with their health practitioner and make an informed decision.”
Approximately two thirds of people with epilepsy respond well to conventional antiepileptic medication, however the other third have intractable, medication resistant epilepsy and will continue to experience seizures, with some suffering with recurrent severe and damaging seizures on a daily basis. This group of people has been the focus for research into epilepsy and cannabinoids.
“There is still much research to be done, however evidence suggests that the endocannabinoid system of people living with epilepsy may be altered,” says neurologist Dr Kaitlyn Parratt. “It is possible that utilising components of the cannabis plant, such as CBD, may help reduce the likelihood of seizures in people with epilepsy by acting on our endocannabinoid system.”
“I am highly supportive of C4E.com.au because it is necessary that patients and carers are educated and provided with reliable and evidence-based information regarding medicinal cannabis. An additional benefit of this resource is that it will significantly improve the ability of patients and carers to have informed discussions with treating specialists,” continued Dr Parratt.
Thanks to the funding support of nib foundation and medicinal cannabis company MGC Pharma, C4E.com.au provides trusted information on:
- Published academic articles and findings from clinical research
- Accessing medicinal cannabis and making an application
- Everyday living with medicinal cannabis
- Cannabis factsheets
- Recorded lectures, books and films
- Life stories, self-assessment tools and quizzes
- Information from around the globe
nib foundation Executive Officer, Amy Tribe, said that providing an easily accessible, centralised website where carers and families can access reliable and unbiased information on medicinal cannabis ensures families can make more informed decisions about the health and wellbeing of their child.
“Currently carers find it difficult to make informed decisions due to a lack of credible and easy to understand information about how to best manage their child’s condition. This inhibits their ability to navigate the health system, access regulated medicinal cannabis legally and participate in clinical trials,” Mrs Tribe said.
“It’s why we teamed up with Epilepsy Action Australia to provide a freely accessible platform that ensures carers can access information from a trusted source, gain access to information on differing government regulations and useful tools to help facilitate questions for discussion with their GP helping to prevent potential harm from misinformation,” she added.
For more information visit: www.c4e.com.au
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- The University of Sydney Community Placement Program, 2016, Medicinal Cannabis in Australia: Science, Regulation & Industry White Paper, The University of Sydney, Australia, p.7-8.
- Epilepsy Action Australia, 2016, Epilepsy Facts and Stats, viewed 11 May 2016, < https://www.epilepsy.org.au/resources/for-media/facts-statistics- about-epilepsy >.
- Rosenberg, E.C., Tsien, R.W., Whalley, B.J., Devinsky, O., 2015, Cannabinoids and Epilepsy, Neurotherapeutics, Springer, DOI 10.1007/s13311-015- 0375-5.
- Todd, L., Burford, J., Vithanage, A., Ireland, C., Suraev, A., Lintzeris, N., 2016, Attitudes and Experiences of Medicinal Cannabis Use in Epilepsy, Epilepsy Action Australia.
- Blair, R.E., Deshpande, L.S., DeLorenzo, R.J., 2015, Cannabinoids: is there a potential treatment role in epilepsy?, Expert Opinion on Pharmacotherapy, Vol.16, No.13, Pp. 1991.
- Devinsky O, Cross JH, Laux L, March E, Miller I, Nabbout R, Scheffer IE, Thiele EA, Wright S, (2017) Trial of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome, N Engl J Med, 376:2011-2020