Cameron Boyce, not a name that met anything to me and when news of his death broke on 20th July I was so caught up in my grief for my own Mum that I didn’t bat an eyelid. That was until the family released a statement saying “He passed away in his sleep due to a seizure which was a result of an ongoing medical condition for which he was being treated.” My inbox, texts and facebook went nuts as it always does when seizures/epilepsy hit the headlines. Then today 31st July the coroner ruled that he died of Sudden Unexpected Death in Epilepsy. My heart broke, for his family for his friends and for those who will find out the risks of their condition through social media and the news. The sad truth is despite the amazing work of SUDEP Action neurologists still seem to avoid the conversation. It isn’t pretty, it isnt a comfortable conversation to have but it is one that we should be having. SUDEP Action told me “We have been busy trying to get the message out that, whilst it is scary to think about SUDEP – it’s really important for people with epilepsy to know about it and tackle epilepsy risks.” The Most telling is the research that has come out of our Epilepsy Deaths Register(EDR).
https://sudep.org/sites/default/files/the_adult_profile_of_sudep_using_the_epilepsy_deaths_register_abn.pdf SUDEP Action work to prevent epilepsy deaths and note that despite an increase in information provision about risks of death in epilepsy, many of those who have died were unaware that you could die of epilepsy. Many families reporting to the Epilepsy death register stated ‘lack of information’ as a possible contributory factor to the death - “if they had known, they may have adopted some risk reduction strategies” What frustrates me is that a cancer patient wouldnt be told the risks of their condition, a heart patient would be made aware, most conditions the doctors share the risks. Why the hell are neurologists not doing the same. I am a firm believer there should be a converation. The risk of SUDEP decreases if you manage your risks. Take medication, get enough rest and know your triggers. SUDEP Action said “ We do recommend clinicians/health professionals have these vital conversations asap, as there are ways to do this positively. This then encourages people with epilepsy to develop good #epilepsy habits. There are resources, leaflets and free award winning safety tools - which can be used to aid these conversations.
If people are concerned about SUDEP, the can find more information on SUDEP Action website. www.sudep.org “
I hope my post helps people, sign posts them to links to get help, to understand the risks but not be scared. SUDEP Action are the most amazing charity and will go above and beyond to help you. Take care and purple hugs to all. Contact me: Twitter/Instagram: @fairyfaye1986 Email: [email protected] Facebookpage: https://www.facebook.com/fairyfaye1986/?ref=aymt_homepage_panel Facebook support group: https://www.facebook.com/groups/739520702798749/
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AuthorMy names Faye, mostly known for being a tea addict, swimmer and now Paralegal and part time student. I'm 36, married and I had my 1st (and only) child in June 2015. Oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy and the voice I have become for those with epilepsy. Archives
December 2022
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