I consider what follows a major success. You see I am an adult, an ageing adult and the main group of people who are at risk of SUDEP are much younger than me. Coming out of their teen years they are just becoming adults and no matter how much I love or loath it they think differently to me. Yes, I may consider myself as Internet savvy and as such I think I was a reasonably early adopter of technologies like Facebook. But that will never help me get my youth back. And in getting the message out to young adults with epilepsy about the risks around SUDEP is not easy for me, or anyone of a certain age.
But that is definitely not true of one of my nieces who posted about Jane as a person with epilepsy of a similar age. The tone she uses are more attuned to that age group, even the website Tumblr is more in tune with a younger age group (mind you as the days roll by more thing seem to be younger than me!!!). Tumblr is largely like a blogging site but focusing on sharing pictures.
What makes this particular posting most effective is that it is on a "site" within Tumblr aimed directly at teenagers living with epilepsy. An almost perfect audience for where any message about Jane's sudden and unexpected death might go.
Beyond this there is a fresh joy for us in seeing yet another picture of our Jane, one we have not seen before and one that is a very natural and for us gorgeous picture. So until I found it by searching google here is our Jane on the website Teen Advocates for Epilepsy - We Make Epilepsy Look Cool.
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