Wednesday, November 30, 2011

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. 


Unknown said...

You're doing good work and it's great when you get surprised with knowledge when you were looking to educate others. Fact #28 is astounding. Keep up the good work, every bit helps!

Trish Hughes Kreis said...

Thanks, Dennis! I appreciate you reading the information. It amazes me too how many people are affected and how that translates into dollars lost high medical costs. Yet the money allocated for research just isn't proportional. So odd to me!

Jane said...

Trish... I think that you did a wonderful job. I didn't even come close to putting out 30 days worth of facts about PH.

Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS

Leslie H said...

This has been an interesting month for me. This the month my epilepsy, which had been completely controlled for 13 years, began again in earnest. It is the month I have struggled with many feelings - disappointment, fear, failure, helplessness, anger. But this is also the month I found new support in you and other web friends. It's the month I learned there are fantastic advoates, people who don't have seizure disorders, but who have made epilepsy their personal campaign. It is the month I have gained a new sense of gratitude.

Trish Hughes Kreis said...

Leslie, I am so sorry your epilepsy has made such an abrupt change this month. I'm thinking of you and hope your neuro can find something to get the seizures back under control. I'm happy to have connected with you too and won't go away just because it's December! :-)

Trish Hughes Kreis said...

Thank you, Jane! You have done wonders for PH Awareness this month (raising money, giving your speech) not to mention the amount of time you've spent this month fighting to get the meds Nicole needs. Plus, you raise awareness for PH all throughout the year! I hope now that you have Nicole's meds, you are able to take a little break. Take care.

David said...

Hopefully the holidays will offer you a chance to catch your breath - you have been obviously very busy doing wonderful work! - David

Anonymous said...

I think the most important thing for me, about Epilepsy Awareness Month, was the fact I stepped out of my comfort zone and reached out and shared Facts I learned, asking to be Friends with people I've never met, and shared my story about Jason and our family. I did this thru Facebook, which I've been a part of for awhile, but more inactive than not. I took a deep breath, joined Crowdrise and started a Project to raise money for research for CURE. (Way out of my comfort zone!). Certainly not in the Thousands of dollars, but, hopefully enough to maybe even keep the lights on in an Epilepsy Research Lab for a day or two...every cent helps in some way, right. I posted comments on other peoples pages and blogs, something, I usually don't do, thinking, who really cares, but found out so many do. So, I have to say, this last month has helped me personally, get more active than I've been in many years. I hope to continue raising awareness in whatever way I can from my own little corner of the world.

Trish, I Thank You. You were most gracious in reaching out and sharing and letting me ramble on in my own way...:-)

Linda Andersen

Trish Hughes Kreis said...

Linda, I'm so grateful to you for reaching out. It must be especially difficult being secluded in your rural area of North Dakota. The internet is a great way to make new friends, find and share information and not feel so isolated. I feel that Robert and Jason are kindred spirits and am so pleased to know he has someone like that out there. Good for you for your fundraising efforts! I haven't yet tackled that and admire your initiative in doing so! Talk to you soon. Trish

Trish Hughes Kreis said...

David, Thank you so much for your support. Now I can get back to those projects I promised, ahem, people. :-)