In epilepsy there lives a paradox that is both self-serving, and yet possibly counterproductive.

For children, men and women who have epilepsy, particularly those who otherwise enjoy good health and typical lives, there is an important effort to demystify and destigmatize the disorder. These people who suffer from epilepsy want to be seen as “same” rather than “other.” They do not want to be shunned, outcast, shamed or discriminated against. It is their goal—and rightfully so—to live full lives, to be included in society, to enjoy each day without feeling marginalized or avoided like the plague as has historically been the case.

In recent years these valiant efforts, by people for people with epilepsy, have enjoyed some success, including the emergence of characters in movies with epilepsy appearing just as they are—normal folks, albeit some of whom wear helmets. People with epilepsy are speaking out and letting others know they are not to be feared, but rather embraced, just like anyone else, and that living with epilepsy is not a barrier to whatever they might want to accomplish.

On the flip side, this "normalization" of epilepsy and its impact on lives might risk impeding the progress of epilepsy research and advocacy. If the myth that epilepsy is a benign condition where you take a pill and everything is okay—normal—persists, we might have a harder time garnering the appropriate funding to find a cure.

So, while some folks with epilepsy are enjoying seizure freedom with the use of devices, surgery, dietary therapy and/or drugs (don’t forget the drugs always come with distasteful side effects) and are able to go about their daily lives, I am making a concerted effort to tell people about epilepsy’s horrors: the uncontrolled seizures, the repeated hospitalizations, the powerful mind-numbing drugs, the painful blood draws, the abhorrent drug side effects, the consequential developmental delays, the risk of sudden death in epilepsy (SUDEP) and death from related accidents such as drowning, the financial burden on society and families, the emotional toll on families, the shameful lack of pharmaceutical, public and private funding for better treatments and a cure, the pitiable lack of a prominent celebrity voice advocating for epilepsy education and research.

To be honest, epilepsy—particularly uncontrolled—is a disastrous, tragic condition not to be underestimated. It can strike anyone at any moment. There is no preventative lifestyle. There is no predicting its wrath. Moreover, there is no cure in sight. But we have the power to change that. We simply need to understand epilepsy and advocate for its awareness and funding.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It’s not hard. Just do it one story at a time. It's as easy as pushing a button.
Give to cure epilepsy: http://www.calvinscure.com

Savannah, 18, was born healthy but developed epilepsy as a child. Despite trying numerous drugs, dietary therapy, brain surgery and an implanted device, her seizures persist. She has had over 28,000 seizures in her lifetime. 

1 comment:

  1. In the work that I've done with the EFA and various national organizations devoted to helping those with epilepsy, I've found that "living well with epilepsy" gets far more attention than the "living hell of epilepsy." I do think, though, that it's getting better and it's through the continued efforts of people like you, like us that there's movement.