Wednesday, 21 May 2014

National Epilepsy week: Everyone knows someone

There seems to be a week for everything these days doesn't there? According to our local bakery it was doughnut week last week (how did I miss this?) Other bloggers are doing National vegetarian week posts this week, and I'm personally championing National I've lost my flip flops and driving M mad by turning the house upside down in search of them week. Although with any luck that'll draw to a fairly early close.

Seriously though, it's National Epilepsy week - this year's theme is Everyone knows someone - One in a hundred people in the UK have a diagnosis of epilepsy so whether you measure your life in a friends list or an address book it's likely that there's someone in there with the condition.

Epilepsy isn't something I feel I 'suffer' with - it's certainly something I live with and affects many aspects of my day to day life - from bathing to birth plans and everything in between. It's frustrating for me and those around me when I'm limited by the condition and at the same time wonderful when it doesn't stand in the way of many many wonderful days (see photo above)

I do wonder however, if everyone knows someone, why is there so much stigma around epilepsy? Why do people think it's OK to suggest 'throwing your medication away' or that supporting you is too much like hard work? Why do people ask the First Aider supporting you if 'she's on drugs?' All these small minded judgements hurt us - and everyone I know with epilepsy has their own tale to tell, of discrimination, being sidelined, overlooked, misjudged, hurt and ignored. I would ask that if you're reading (and please do share) this post that you look at those around you and consider the sensitivity with which they approach the person they know. Have you ever talked to them about how they would like you to support them if they had a seizure? Do you know what's important to that person? Why not make it your mission to find out - make a pot of tea, crack open the chocolate digestives and ask.

Working on that 'everyone knows someone' basis - would you know what to do if that person had a seizure? Do you know what their seizures look like? Remember that not everyone has the stereotypical seizure we see on the tv or in films where they fall to the floor, and have jerks. For those tonic clonic seizures (or any where someone loses consciousness) here are the current guidelines for how to support someone (taken from the Epilepsy society):
  1. Stay calm.
  2. Look around - is the person in a dangerous place?  If not, don't move them. Move objects like furniture away from them.
  3. Note the time the seizure starts.
  4. Stay with them. If they don't collapse but seem blank or confused, gently guide them away from any danger. Speak quietly and calmly.
  5. Cushion their head with something soft if they have collapsed to the ground.
  6. Don't hold them down.
  7. Don't put anything in their mouth.
  8. Check the time again. If a convulsive (shaking) seizure doesn't stop after 5 minutes, call for an ambulance (dial 999).
  9. After the seizure has stopped, put them into the recovery position and check that their breathing is returning to normal.  Gently check their mouth to see that nothing is blocking their airway such as food or false teeth. If their breathing sounds difficult after the seizure has stopped, call for an ambulance.
  10. Stay with them until they are fully recovered 
If they are injured, or they have another seizure without recovering fully from the first seizure, call for an ambulance.

Importantly, that person you know may not have seizures where they lose consciousness - here is the guidance for First Aid for other seizure types.

Today more than ever I'd appreicate it if you would share this post - National Epilepsy week is understandably close to my heart, but with epilepsy affecting 1 in 100 of the population, it's not just me - let's see what change we can affect by increasing awareness, reducing stigma and just being a bit kinder to each other.

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