Saturday, November 12, 2011

Another Week of Epilepsy Awareness

Some excellent organizations are helping raise awareness about epilepsy.  This is not a new condition but epilepsy has been kept in the shadows for far too long for reasons that basically boil down to fear.  The Epilepsy Foundation, the Talk About It Organization and CURE: Citizens United for Research in Epilepsy are just a few of the organizations doing great work to spread awareness and education and raising money for epilepsy research. 

My own efforts this month are concentrating on education and awareness.  My Facebook page has a new fact each day and you can follow me on Twitter (@robertssister1) to get facts about epilepsy and how they relate to Robert.
I’d love to know if the facts posted last week are new to you and would enjoy learning facts from you!  Post your own fact in the comment section and I’ll be sure to credit you if I use the information this month. 

Did you know . . .
Fact 6: It is a MYTH that a person can swallow their tongue during a seizure.    Also, nothing should be placed in a person’s mouth during a seizure.  The best way to help a person having a seizure (if they are lying down) is to help keep them safe.  If possible, roll them over to their side and place something soft under their head.  The tongue swallowing MYTH persists today so please spread the word that this is not true.

Fact 7:  In 1990 Congress passed the Americans with Disabilities Act. According to the World Health Organization, as recently as the 70’s it was legal to deny people with seizures access to restaurants and theatres.  According to The Epilepsy Therapy Project (, there were even laws forbidding people with epilepsy to marry or become parents and some states allowed sterilization!  Can we all agree to just stop discriminating – whether or not there's a law telling us not to?
Fact 8:  Most people with epilepsy live a full life but the mortality rate among people with epilepsy is approximately 2 to 3 times higher than the general population.  Up to 50,000 deaths occur annually in the U.S. from SUDEP (Sudden Unexplained Death in Epilepsy), prolonged seizures, and other seizure-related causes.  When Robert was 15 he came very close to being a statistic when he had a seizure in a swimming pool.  He was in a coma for a few days but survived (he apparently couldn’t pass up more opportunities to beat his sister at cards!).

Fact 9:  Epilepsy surgery is one treatment available for people living with epilepsy.   After surgery, 70% of patients are seizure-free, with 85% having a significant reduction in seizures.  In September, Aurora Health Care conducted a Temporal Lobectomy on Twitter!  Did you “watch” it?  It was exciting and informative!

Fact 10:  The Epilepsy Foundation reports that one study suggests 68% of people with poorly controlled epilepsy do not have personal friends (and in 30% of people with epilepsy, seizures can’t be controlled with treatment).  Personal friendships help develop good self-esteem which reduces depression.   Help me spread awareness of epilepsy so the stigma disappears and people with epilepsy have an easier time making some new friends.  It’s a win/win!  

Fact 11:  Keeping a seizure diary can help someone with epilepsy and their neurologist figure out possible seizure triggers and what medications are or aren’t working.  Robert kept a seizure diary for many years when he was in research studies at UCSF.  Now Robert doesn’t remember his seizures so he’s not a very reliable source.  I rely on witnesses to his seizures to provide details which I log and provide to his neurologist. 
Fact 12:  In over 30% percent of patients, seizures can’t be controlled with treatment which can lead to brain damage and death.  After surgeries, trying every combination of meds possible, a Vagus Nerve Stimulator and the Deep Brain Stimulator, Robert is still in this group.  What will help reduce this number?   Awareness & research!  Help spread awareness so the research money will increase. 

What epilepsy facts can you share?


June Sockol said...

Great facts Trish. I didn't know much about epilepsy til I started to read your blog. I agree with you, we need to bring awareness to people. The more people know, the more they can see the person and not the disability. And, hopefully more awareness will bring more funding.

Franziska San Pedro said...

Hi Trish,

that's very interesting and helpful all your information! My sister had occasional epilepsy, but she never had the symptoms that most people would think it would look like.
Her epilepsy comes along with the rare Hashimoto Thyoeriditis, it's a thyroid disease and can't be fixed but if it is untreated the organs get long-term damage. Luckily, I heard about the symptoms on the radio and my sister was able to get help! That was pretty amazing. With medication she's doing fine.

Thanks for more information on epilepsy, there's so much stuff I don#t know,

Franziska San Pedro
The Abstract Impressionist Artress

keepupweb said...

Trish, thanks so much for helping to educate us and build awareness of epilepsy. Awareness should help to raise funds for more research.

I confess that I believed the tongue swallowing myth. Now, (thanks to you), I know better.

Trish Hughes Kreis said...

Sherryl, I'm so happy you learned something from my daily facts! For as prevalent as epilepsy is, it is shockingly underfunded so I'm hoping more awareness will bring in more research dollars.

Trish Hughes Kreis said...

Franziska, You amaze me everytime I hear from you! That is awesome you figured out what was wrong with your sister. I'm happy the medications are helping keep her seizure free -- she owes that to you and I hope you don't let her forget it. :-)

Trish Hughes Kreis said...

June, It would be nice for people to look past the disability and see the person. Seizures are particularly disconcerting so I'm hoping the more people hear about them or see them, the less "freaked out" they are. You know as well as anyone how people are treated when they are a little different. I love that we're learning from each other! :-)

Heidi Alberti & Atticus Uncensored said...

Trish -- you have such a wealth of information! I've said it before, but I'll say it again, Robert is so fortunate to have you as his sister!

I used to work with a woman who was epileptic and we were told to hold her tongue down with a spoon if she had a seizure. I had no idea this was a false myth!

Thanks for the info. I'm going to share on twitter.

Heidi & Atticus
"commentary to give you paws..."

Unknown said...

Trish, your information is so important to those who don't know. How many people have been hurt or even killed by well meaning people who do the wrong thing during a seizure? Your voice, along with many others, is helping to bring the issue of seizure disorders into the light. Thank you.

bill austin howe
Austin's Thoughts

Trish Hughes Kreis said...

Bill, I've been learning a lot this month myself! I'm happy posting these facts are helpful to others as well.

Trish Hughes Kreis said...

Heidi, I cringe just thinking about the spoon in that woman's mouth! Incorrect (and sometimes harmful) information about epilepsy has been perpetuated for a long time but awareness and education is starting to get there. As I mentioned to Bill, I've learned so much myself this month too!

Judy, The Reflective Writer said...

I learn something new every time I read your posts about epilepsy, Trish. I never thought that much about laws--it certainly seems archaic to deny entrance to a restaurant based on seizure history! I can imagine how limiting this illness can be. Transportation is difficult (presumably no driving - is that true?), people are afraid, you get isolated. There are a lot of barriers.

You've really done a service this month with your educational approach, Trish. Robert may not really know how much you are doing, but I know he appreciates his sister!

Judy Stone-Goldman
The Reflective Writer
Personal-Professional Balance Through Writing

Trish Hughes Kreis said...

Judy, It makes me happy to know you (and others) are learning something about epilepsy this month. I'm even learning things which, you'd think after being around it for so long, wouldn't be possible! I especially thought of you when I did the word origin fact since you're such a gifted wordsmith. :-) From what I understand, driving rules are different in each state but I believe each state has a certain length of time you have to be seizure free in order to get a license. I think I'll have to research that and include it in one of my future facts! Thanks for the idea.