SUDEP - please help
I'm taking a break from my normal posts all about me & my uber-exciting life (!) to bring you Arthur & his family.
Those of you who've been reading my blog for a while will know he's my bestest bud & we're always there for each other. Just over a year ago I got the kind of phone call you never want to get - it was Art calling to say his 24year old sister Jane had died suddenly. I knew she had epilepsy & had been having a few fits but I (along with everyone else) didn't realise about the risk of SUDEP (Sudden Unexpected Death in Epilepsy).
I'll never forget the moment at the full-to-burst Crematorium just after friends & family had shared their stories & songs about Jane when Art, Andy, Les & Sam just stood there in a group hug, supporting each other.
They're such an incredible family, really close & always want to help & be there for others - a year on & they have 2 aims:
AIM 1. To raise the profile of SUDEP so that patients/families/friends all know of the risk & that epilepsy isn't simply an in it can be something more serious & can fatal. In particular they want to stress the following:
In less than 40days Art along with 32 of Jane's friend/family are entering the Blenheim Triathlon so that they can raise the money & awareness needed. I normally don't like asking for help on here but if you get a moment & would like to help then please click here to go to their fundraising page.
Another way of spreading the word is through the 'For Jane' blog (click here) that her dad Andy set up. It's written in such a loving way & is a great way of seeing what they've been up to & are planning to do in the future. It also has links to all the relevant websites including the 2 charities they're fundraising for the Epilepsy Society & Epilepsy Bereaved. They've also had quite a lot of media coverage:
Jane really was a truly lovely person, she was lively, bubbly & certainly had an opinion (usually about my crap taste in music!). I can't listen to James Brown (especially his last ever gig at the Electric Ballroom that we were lucky enough to go to) or Gomez without thinking of her, especially "Tijuana Lady" (gets me every time!). Even if you find a few pennies down the back of your sofa today or just pass on the info of SUDEP you'll be making a difference.
AIM 1. To raise the profile of SUDEP so that patients/families/friends all know of the risk & that epilepsy isn't simply an in it can be something more serious & can fatal. In particular they want to stress the following:
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Epilepsy can kill indirectly - such as walking in front of a bus whilst having a fit; however, SUDEP is a fit related death where a severe seizure is believed to stop the heart/lungs functioning.
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Over half a million people in the UK have Epilepsy, around 1000-1500 die per year from epilepsy related deaths; around 500 of these are attributed to SUDEP.
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At the time of Jane's diagnosis they were never told that SUDEP was a possibility and at no point during the consultations was she ever made aware of this. This lack of information is unbelievably common amongst epilepsy patients.
AIM 2. To raise money for 2 charities who work towards finding a cause & a solution to SUDEP (I've included links to the individual charities further down if you'd like to find out more.).
Thanks so much for reading.
Ttfn x
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