Epilepsy is not at the top of the list for research dollars. Scrolling through the internet, there is research being done, mostly about neurobiology - the brain and it’s workings - and the genetics of epilepsy. I’m not certain of the specifics regarding the effects of active epilepsy on health care dollars, employment costs, the education system and in general someone’s home life. These issues would include the effects on the caregiver, if that is required, and details like care giver burnout, daycare, and respite beds. Then, there are dietary and medication requirements to be factored in to all these details.
Home life can become extremely compromised, depending on the severity of the epilepsy, if there is more than one family member with this condition, how treatable are the conditions and the age of the individual with epilepsy. The two demographics that show the highest rates of epilepsy are children, and further, a significant amount (at least 14%) of people over age sixty five.
I have never been very interested in doing research, but interested in the results of research especially when it pertains to myself. I have benefited from the research that developed Phenytoin (Dilantin), phenobarbitol, ElectroEncephalograms (EEG) and the medical education my physicians have obtained. My form of epilepsy, idiopathic and temporal lobe, is pretty basic and I live a pretty good life - independently.
The more complex any health care condition is, the more complex the research must be. Increased complexity of this neurological condition means that there is more labour intensive daily care required at home, at school, and in the community.
Another question that I raise is - Which must come first? Where should the dollars be spent? Which health condition needs to be addressed first. Epilepsy, this hidden disease with it’s attendant stigma, is just not at the front of the line and may even get pushed back occasionally.
Another issue that relates to research, and yes I am grateful for what I have, is that research results do not trickle down very quickly - if at all - to the individuals and families that require the knowledge to care for themselves or their loved ones.
We each must take care of our epilepsy on a daily basis, regardless of all the issues I have just raised. And many times individuals and families do it based on limited knowledge, the knowledge of physicians and plain old fashioned common sense.
Addendum: August, 2024 - An added problem has arisen since 2013 - It is becoming increasingly difficult to obtain a family physician, a neurologist, and/or an epileptoligist depending on one's location in the country of residence.
“Science is simply common sense at it’s best, that is
rigidly accurate in observation, and merciless to fallacy in logic.”
~ Thomas Henry Huxley
Author's note:
Contact the BC Epilepsy Society on line for contact information, provincially and locally.
This information still accurate:
Canadian resources: canadianepilepsyalliance.org
https://www.epilepsy.ca
United States resource: www.epilepsyfoundation.org
This information, links and phone numbers no longer valid.
Resource (practical) here in Victoria
Victoria Epilepsy & Parkinson’s Centre
813 Darwin Avenue
Victoria BC V8X 2X7
Phone: 250-475-6677
Fax: 250-475-6619
Email: help@vepc.bc.ca
Web: www.vepc.bc.ca
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