For thousands of years people didn’t understand what epilepsy was. They were scared of it and they treated anyone with epilepsy as an outcast.
More knowledge and understanding in the first half of the 20th century meant that attitudes began to improve. But change was slow and life was still very hard for most people with epilepsy.
At this time, pioneers like Joseph Tylor Fox argued that an organisation was needed to represent epilepsy and the interests of everyone who was affected by the condition. Less than one year after his death, the organisation that he had long called for finally came into being. In July 1950, the British Epilepsy Association (BEA) was launched with the purpose of changing public attitudes towards epilepsy and improving people’s lives.
Since then, thousands of people have helped to build a proud history. Life today is still difficult for many people with epilepsy, but BEA’s achievements over the years mean that today things are much better than they might have been.
Epilepsy Action has always represented the interests of people with epilepsy and their families and carers. In practice, this means protecting people and trying to make their lives better. Over the years, we have been responsible for so many changes for the better. These include changes:
- in the law
- in public awareness
- in social attitudes
- in medical practice
- in scientific knowledge.
In short, Epilepsy Action has touched and improved the lives of millions of people.
We have come a long way since 1950. But the work is not yet finished. Epilepsy Action will continue to do its best to meet the needs and encourage the aspirations of all people with epilepsy and those with an interest in the condition.
Although we don’t know what the future holds, we do know from our history that we can shape and influence what will happen. We know that Epilepsy Action makes a difference. Today, the world is a better place for people with epilepsy because of what Epilepsy Action has done in the past. Tomorrow the world will be even better because of what we do today.
All we want is to live in a society where everyone understands epilepsy and where attitudes towards the condition are based on fact not fiction. We will not stop until that day comes.
To celebrate our Diamond Jubilee in 2010, we produced our 'History Wall', looking back at all the major events and milestones in Epilepsy Action's history. You can download and read the History Wall here [PDF].
Comments: read the 2 comments or add yours
Comments
Although you state that Epilepsy Action has been around since 1950, while living in Northern Ireland and having epilepsy from birth, I never had even heard about it. - and I have been around since you were only nine years old.
Is there enough publicity for the people in Northern Ireland and who is responsible for putting it out to the communities there? I know there is an office in or around the greater Belfast area, BUT, as I have said, no one ever informed me about it - we didn't have epilepsy nurses, so it was just the consultants at the hospitals I saw.
Fortunately now I don't have the need for it since I went under the scalpel 20 years ago in Belfast, however I know there still are people there who still suffer the affliction and am wondering how much they know about E.A.
Do you get many inquiries from Northern Ireland?
First of all the word "STIGMA" connected with Epilepsy urgently needs to be outlawed. A disability like Epilepsy is as integral to a human being like me as is being white, orange, black , short sighted or tall. Then how can I or anyone else describe me as a stigma.
Secondly, since Epilepsy is "insidious" and is not visible people with Epilepsy can very easily be taken advantage of. Epilepsy Action now needs to take very serious action to help make the legislations stronger and stricter. The bruise I get from an argument or a fight is not on my face but in my brain.
I am an Enciphalitis surviver. No one ever mentioned that one day the scar left in my brain will lead to Epilepsy. The British people are champions at raising awarness and we must raise awareness about Epilepsy very quickly and actively before a lot more people are made to suffer endlessly and silently.
Action