GeneticEpilepsyJournal

 It is Purple Day. The 26th March is Purple Day, a time to get people talking about epilepsy, raise awareness of the condition and raise vital funds. On this day, tens of thousands of people across the globe come together to start conversations around epilepsy, raise awareness of the condition and fundraise to make a difference to the lives of people affected by epilepsy. Did you know that 1 in 10 people will have at least one seizure in their lifetime? And 1 in 26 people will develop epilepsy in their lifetime! So, today, on Purple Day, here's some important information everyone should know and keep in mind: Knowledge is power!

I strongly felt two messages today and in looking at them again, I feel they might be directly connected to this blog. The first I saw early on this morning and it was from "The Captain": Later I attended this wonderful online meeting in support of my sister in law and heard this message (along with some other great ones) emphasized: " You never know who your story is going to connect to. You never know who needs to hear exactly what you're saying to recognize something in their own story that helps them heal " I felt both of these statements and kept coming back to why am I here? Why am I doing this? I think the final push to post and start this blog was my friend AR. She's a "met in real life once, then continued the friendship through social media" relationship for me and I've enjoyed her almost daily morning posts sipping her caffeine and talking about her day. (I love social media for this type of stuff - checking in, catching up, and fol...

 Let's be clear from the get-go: I'm NOT an expert.  Nope. Not an expert. I am however deep into my 30's, with a variety of seizures in my history and from what I've learned am likely GEFS+ (Genetic Epilepsy Febrile Seizures Plus).  My daughter, Darling, is a young kid who is also GEFS+. Daring is still up in the air. He's a toddler, with hard to control seizures in a variety of forms, which all that pointing to Dravet Syndrome ... however (and I'll knock on every piece of wood while being completely grateful & trying to stay optimistic)  he's crushing all of his milestones and we hope he continues to do so. I'm sitting, waiting, wishing that these kiddos both turn out to be bright, bold, beautiful, and independent humans with nothing holding them back. (All good things, all good things, please!) I'm just one person living this life caring for my two kids, also living this life, and I thought I'd share what we've experienced, learned or o...

I said to my therapist (yea, let's just jump right in the deep end) the other day that there is this extreme balance of responsibility... one where I feel so responsible that I just want to jump off a bridge* in overwhelming guilt and yet, countering that, the awareness that I'm likely the best person to care (be responsible) for them since I know (to some degree) what living with epilepsy is like. Hi, I'm Jen and I have two wonderful, awesome kiddos with forms of genetic epilepsy ... that, through testing down the line, we found out they got from me - Yup, we three share the same SCN1A genetic mutation and that's why I feel this heaviness of responsibility. Did I know about it before having my daughter, Darling? Nope. Did I know about it before having my son, Daring? Nope ... but the guilt is still there. Here's some great info on the SCN1A gene mutation and what it might mean: http://epilepsygenetics.net/the-epilepsiome/scn1a-this-is-what-you-need-to-know/ I say...