On the 24th August the the National Society of Epilepsy on facebook advertised that:
'Woman's Hour would be discussing the possible legislation so that all schools are required to have required to have policies on caring for students with medical conditions such as epilepsy.'
I've started to listen to Radio 4 on the BBC iplayer on the odd occasion, and when I saw the comments on facebook that were written in reaction to it, thought it might be worth a listen. However, I was incredibly disappointed when the programme used the story of a boy with diabetes as their main case study. And please don't think that I'm trying to think that diabetes is in anyway easier to deal with, I know a eleven year old girl through my stepsister who has the diabetes and has to inject herself and test her blood sugar level before every meal, but I digress because we are talking about epilepsy and what I want to know is, what was the point of NSE advertising it on their facebook page when the programme only mentioned the condition on the programme once or twice....the whole point of the society and their sister charity Epilepsy Action is to raise awareness of the condition, and in this case, they did not do it.
I did at one point, a couple of years ago, try and get involved with Epilepsy Action, as an AV (Accredited Volunteer) who 'provided one-to-one support, advice and information about epilepsy.' They also 'give epilepsy awareness presentations to local groups, care homes, schools, companies and any other organisation that need an awareness session.'It was exactly the sort of contribution I would have liked to have made to the Epilepsy community, having grown up with the condition since the 70's I knew how little awarenesss there is out there. However at the time my stamina meant that I wasn't able to attend the training sessions in London which started at nine am in the morning. Now I wish I had. When I walk down the street I never see people collecting for 'Epilepsy Action' or 'NSE.' No, it's always Oxfam, Guide Dogs for the Blind, Cancer Research or some other such charity that is more well known.
Sadly, our epilepsy charities have failed to deliver the target of the AV's to acheive by visiting schools and organisations to increase awareness. This was only highlighted by a mother who told her daughter's story on the NSE page as a result of Woman's Hour. Her daughter, lets call her Leila started having tonic clonic seizures when she was twelve (2008). Her hospital were very good in carrying out tests and referrals her Paedtrician eventually diagnosed Idiopathic Primary Generalised Epilepsy and she was started on Epilim straight away.
Leila continued to have tonic clonic seizures as she was reaching her ultimate drug level on Epilim (2500mg). Amanda, her mother knew she needed to tell her school what was happening. So she informed her head of year who in her words 'did nothing to pass on information about her condition to her teachers despite letters from her Paediatrician and the school doctor.' So Amanda then had to write to every one of her teachers and eventually the Medical Office took notice, issuing her a 'get out of class'card if she felt tired/ill or needed some quiet time. Yet every school year, this information wasn't being passed down to new teachers so Amanda had to keep writing letters to make sure these teachers were informed.
Now, two years after being diagnosed Leila has slowly going through a process of withdrawing from Epilim (currently on 500mg every other day) as her fits have decreased to the point where her Paedritician thinks she may be growing out of it which would be fantastic for her. Yet the condition has to stay on her record and when Amanda tried to explain this to the school, the teacher's reactions only highlighted that ignorance of epilepsy is still present in today's society. They believed they could wipe her medical record clean and that she had been 'cured' of epilepsy. Despite what people might think, it is a huge risk coming off anti-convulsants.
Epilepsy is one of those conditions that so many people are scared to talk about. There's that horrid word 'misunderstood.' So it's up to the epileptic to educate others but even for us, it's one of the hardest things to do. I have so many memories of my palms sweating when I had to tell someone in my early/mid twenties, by then I was able to read their body language. I never knew what I would get back then fear or acceptance. These days, I make a it a conversation point, showing what I've done despite having 'head trauma's.' I don't let it stop me and I never will.
But that's why we need to talk about it, so that people see that it's nothing to be scared of, that it doesn't make us any different. Since I've started writing this blog, I've also started Twittering. I never thought I would, I found that twitter.com became a great way of finding out what the rest of the world were doing to help epilepsy awareness. One of my greatest finds is a website that was the inspiration for the name for this particular post called talkaboutit.org. It's the most positive website and proactive website about epilepsy. Set up by Greg Grunberg and friends, and is a really great illustration that epilepsy need not to be feared, and people who have the condition can lead normal lives as possible.
