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Old 05-28-2019, 01:06 PM
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Smile Doing my bit for epilepsy - 12 in 12

Hi all!

Gosh, I joined this community back in 2012, with a post where I essentially broke down about my diagnosis with partial seizures. I have come a long way since then and I wanted to share this because I flipped what I deemed negative into a positive. But I want to say without the support of everyone I wouldn't be where I am now - thank you

I write a blog and have a youtube channel, so when I was diagnosed I decided to make videos telling people about my kind of epilepsy. Dr Google wasn't the most helpful when I was trying to find answers, so I figured I best do something about it! I went on a bumpy journey with Keppra to now Lamotrigine and thankfully I'm more controlled than ever.

After making my youtube videos and writing posts, I've got 100s of emails worldwide from people who have felt alone like I did. Even now, people still look at me gone out when I tell them that I don't 'fit' or have photosensitivity with my epilepsy. The lack of knowledge is still alarming, so I'm doing something else to raise awareness.

I decided after I sunk into a black hole of depression post-diagnosis, to do a triathlon for an epilepsy charity, that was in 2014. Since then I've vowed to see the world and push myself in sports. I'm going to be doing 12 in 12 challenges to raise awareness of invisible disabilities like mine and that we can still have full lives (obviously in the right boundaries for the person). Starting next month and hopefully ending with an iron man race to finish.

I just wanted to pop this in the lemonade forum because I feel like I've completely switched my attitude. I cannot do anything about my epilepsy, and I had my first one in 6 months the other day, which has left me soooooo low and out of sorts.... but I can do something about raising awareness.

Anyways, my blog is - I'm hoping to organise a run in the UK for those in the epilepsy community to join me on with my epilepsy charity, as part of my 12 in 12. If anyone is interested let me know

Love you all and thanks so much for holding my hand back in 2012 xxx
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Bernard (05-30-2019), Nakamova (05-29-2019), Porkette (06-09-2019), RanMan (05-29-2019)
Old 05-29-2019, 10:30 AM
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Hey aggy84, welcome back!

Great to hear this update and all the terrific work you are doing to raise epilepsy awareness! Good luck with your challenges -- an iron man race sounds pretty daunting. Actually for me a mini-triathlon would be daunting too.
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Old 05-29-2019, 02:47 PM
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Thank you! And thank, you - as I believe it was yourself who first sent me a message. Honestly, without people like yourself, I wouldn't be as positive about any of this.
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Old 05-30-2019, 09:19 PM
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It's always nice to hear success stories. Reading your post reminded me just long ago it was when I first started this site. Where has all that time gone? Cheers!
New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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