Wednesday, October 10, 2012

Humanize Epilepsy -- Not Epi-Leprosy

Some of you know that I have been a board member of the Epilepsy Foundation of San Diego for years now.  Virtually all of us have been impacted by serious health issues (either directly, or close family/friends) -- and epilepsy is the affliction that has most directly impacted my family.  

My wonderful sister-in-law, Nikki, has suffered from debilitating seizures for over 12 years now after a serious bout of viral encephalitis, and she cannot live on her own as a result.  Her life will never be the same.  We also have a vastly different form of epilepsy known as "absence seizures" in the family -- these episodes are characterized by brief moments of blank staring (rather than the stero-typical physical shaking for which epilepsy is widely known).  Fortunately, this family member is leading a completely normal life with a regimen of meds and may simply "outgrow" these "episodes," but we don't yet know this for sure in our case.  In any event, we remain positive and hopeful.

Of course, each of us has his or her own "cause" that matters -- but epilepsy seems particularly misunderstood and hidden, despite the fact that nearly 3 MILLION Americans suffer from some form of epilepsy.  3 MILLION!  That is more than twice the number of those suffering with cerebral palsy, muscular dystrophy, multiple sclerosis and Parkinson’s disease combined.

As indicated above, the vast majority of Americans believe epilepsy is a "catch all" for violent shaking.  That simply isn't the case -- that is not what "absence seizures" are at all, as just one example.  And, the vast majority of Americans are terrified by the "violent shaking form" of epilepsy because they simply don't know what to do when they witness it.  That is understandable.  That form of epilepsy is particularly cruel in that it can strike any time and without any notice -- like an earthquake -- and similarly with violent results.  It demeans the body of the person who is afflicted.  It attacks that person's soul.  And, that damage is exacerbated by the frequently horrified stares -- and unwillingness to help -- of those who witness the seizure.  I have seen this time and time again with my sister-in-law.  

Yet, at the same time, these reactions are understandable.  I/we cannot blame these uneducated witnesses, because they simply know nothing about this affliction.  It is swept under a rug.  People pretend it isn't there.  And, when it visibly is, a Scarlett Letter attaches to the victim.  That is the leprosy effect.  That is why I frequently say that epilepsy is an affliction that is frequently seen as epi-leprosy.

Case in point.  I recently learned first-hand that a preacher of some sort was called into a household in my community to essentially perform an exorcism to "cast out" the evil spirits that were the cause of the epilepsy in this person.

As we live here in 2012, it is incredible to me that these massive misconceptions still exist about this affliction that impacts so many.

Education, of course, is the key -- as is shining a light on epilepsy -- to sweep it back from under the rug and into the broad daylight.  To talk about it.  To learn about it.

THAT is the mission of the Epilepsy Foundation of San Diego.

Please help me spread the word -- and, if you want to learn more, reach out to me directly via Twitter, LinkedIn, Facebook, etc.