Saturday 24 May 2014

Day 7: Just Ask

It's been hugely enjoyable to write the blog for the 7 days during epilepsy week. Maybe this time next year we could be further forward with researching a cure or tackling the stigma of epilepsy. The difficulty with epilepsy though, is it's hard to be able to help those with the most serious forms of epilepsy while at the same time tackling the stigma.

The paradox to epilepsy is that by emphasising it's seriousness and finding the funding for care and cure, you are making it more difficult to tackle the stigma. Likewise, by tackling the stigma, people may think the condition isn't serious enough to warrant raising funds for a cure for the most serious types of the condition. 

Where I feel I can best help is by showing that people with epilepsy can be as physically able as anyone else, because I fall into the category of individuals with controlled epilepsy. So as long as I'm disciplined in taking my medication, I should be seizure free the rest of my life in theory. But at the same time, there is far too many people dying because of their epilepsy and under no circumstances would I ever want to forget that. 

People should deserve to ask for help to stop epilepsy deaths, but at the same time, for those who it's relevant for, they should be able to ask for equal treatment to anyone who has a full bill of health too. Because to a large extent, for those individuals, only in name are they epileptic. 

I made a change recently to the shirts that Epilepsy Forward CC would wear. 
There are people across the world who stand in silence for so many causes, but I've never seen it happen in memory of those who have died from epilepsy. The chances are that far too many will have died this week, so we want to remember and tackle stigma at the same time.
The Epilepsy Forward Cycling shirts are a paradox too. They bear the purple of awareness and their purpose is to be as high end as possible to break world records, under the banner of an epilepsy focused sports team, that pushes any healthy individuals limits to the brink. But at the same time they'll have a black band round the right arm of the shirt in remembrance of all the tragic, mostly preventable deaths that have occurred due to the condition.

The variations within epilepsy are huge. They range from a large number of individuals who are Olympic standard athletes, musicians, lawyers, actors, writers, to the horrendous types of epilepsy that require round the clock care. The chances are that if someone is applying for a job, their epilepsy is well under control, but because many people don't know to ask, they don't realise that epilepsy can be totally controlled. They don't know to ask, how a person who may join their company is affected by their epilepsy. At the end of the day, it's not in the individual's interest to lie about how they are affected by their epilepsy, it could mean that they are put in danger. They also don't want to loose a job, because they have been dishonest about their condition, as it will make it incredibly difficult to find another one.

There is a real need to look at the person, not the condition and if in doubt...

Just ask.

As an end to the #blogaday for epilepsy week, I'll leave you with this thought:
I hope the posts have highlighted the struggle on more than one front, that the charities who work for a better life for people with epilepsy face. You probably know someone with epilepsy reasonably close to you. The stats show that 20% of you reading this will have a seizure at some point in your life. Tomorrow, about 87 people will be newly diagnosed with epilepsy in the UK alone, joining the 65 Million people worldwide with the condition.
If you're thinking about taking on a big sporting endeavour, but not sure who to raise funds for, then know this... 
Choosing an epilepsy charity to raise money for, will make a difference to more people than you could probably know. Texting FUTURE87 to 70500 in the UK, will donate £3 to Epilepsy Action and each country's epilepsy charities will likely do something similar to boost what they can do to help stigma, care and cure. 
At the end of the day, any help you can give, however small could make such a difference.

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