Winding Down Epilepsy Awareness Month

Epilepsy Awareness Month started with me thinking I was going to raise awareness for epilepsy!   I was going educate people!   I was going to put on my advocacy hat and put those skills to the test!  As the self-appointed spokesperson for my brother, I was going to let people know what it’s like to live with epilepsy!  

I had big plans.

I almost feel guilty about it (because that’s what I do) but realize I gained so much more from Epilepsy Awareness Month than I gave.  I became aware of many, many stories of others living with epilepsy or caring for someone with epilepsy.  People educated me about epilepsy.   I saw just how many other advocates there are out there but know there’s room for more!  People told me what it was like to live with epilepsy or care for a loved one with epilepsy.  I learned a few facts along the way, too, as I did my research to come up with one fact a day about epilepsy and shared them on my Robert’s Sister Facebook page , through Twitter (@robertssister1) and each week here, here, here and here.    

The last few days of the Epilepsy Awareness Month included several facts that were new to me. 

Fact 27:  Men with epilepsy have their own hormonal changes which can be caused by both the seizures and from the antiepileptic drugs.  These changes can affect mood as well as reproductive function and fertility.  (Many thanks to reader and fellow caregiver, Cindy Mitchell, for sending along articles addressing this topic)!

Fact 28:  According to the CDC, “epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.”  Yet another reason to increase awareness and funding for research.  (Sometimes this month I was compelled to editorialize the facts).

Fact 29:  New research (from Science Daily) indicates that people with epilepsy who used the older generation antiepileptic drugs (such as Phenobarbital, Dilantin, Tegretol, Depakote) for extended periods of time may be at increased risk of hardening of the arteries.  This information shouldn’t dissuade anyone from a treatment that is effective in treating epilepsy but this information may be useful when talking treatment options with your neurologist.  Robert has been on all of these at some point in his life (and still takes Depakote) so I’ll be talking to his neurologist about this study (I'm sure his neurologist loves me).   Of course, this is a trade-off – many times the side-effects are something people with epilepsy have to live with in order to gain seizure control.  Another reason why more research is needed.  (Obviously, I could never be an unbiased news reporter).

Fact 30:  The last fact of the month is something I’ve come to realize even more this month.  Epilepsy affects everyone in different ways and as many people as there are with epilepsy (almost 3 million in the U.S. alone), there are that many ways to live with epilepsy.  Epilepsy presents challenges (stigma, necessary treatments and their unpleasant side effects, discrimination, interruptions from the seizures) but finding support and information is possible.  Living well with epilepsy, living with hope for a cure is possible.  I’ve seen it this month with the fantastic people I’ve met and know it is true with my own brother, Robert. 

Thank you so much for joining me during Epilepsy Awareness Month.  I’ve met some extraordinary people this month who I will share with you in the coming days.  For now, let’s continue to search for a cure and better treatment and bring awareness (and more funding) to epilepsy. 

Please share what your experience has been during Epilepsy Awareness Month 2011.