Living Well With and the Living Hell of Epilepsy

For many, many years, efforts to remove the stigma that epilepsy carries focused on a "living well with epilepsy" approach. "Normal" people who also "happened" to have seizures but who otherwise lived "normal" and productive lives were paraded out in advertisements and marketing materials, and while this helped to dispel myths about epilepsy, the approach neglected a significant number of people whose lives were severely affected by the disease. What happened because of that is a woeful under-funding for research into the causes of and cures for the epilepsies, and, equally as important, a lack of knowledge and awareness of just how serious the disease can be, including a higher incidence of death than breast cancer. The mental health aspects of the disease -- for both the person suffering the seizures and the parents and siblings of that person -- are often unacknowledged despite grim statistics, and the work I've done recently with national groups trying to remedy the inadequacies of the healthcare system have only just pecked at the surface. I call that number -- the nearly 30% of people with epilepsy whose seizures are not controlled and whose lives are significantly impacted by the diseases as those who are experiencing The Living Hell That is Epilepsy.

With that in mind, the Los Angeles affiliate of the Epilepsy Foundation of America produced the following video that they showed at their most recent fundraiser. I think it deserves to be seen and shared and would appreciate you doing so if you have a moment.

How many more children have to die?

As a child psychiatrist and parent, I regard the Newtown horrific mass murder of elementary age children as a final wake up call so that we will never again ask, “How many more children have to die?” Nothing can justify this preventable tragedy to the parents and families of their murdered beloved ones. The time has come to halt the unrelentless chipping away of our mental health care services and quality of care for mental illness, to educate the community about severe mental illness, and to implement strict controls on access to firearms.

Dr. Rochelle Caplan, UCLA Professor Emeritus of Psychiatry and past Director the UCLA Pediatric Neuropsychiatry Program 

This is an excerpt from an excellent article in The Oxford University Press's blog Academic Insights for the Thinking World, titled How many more children have to die? and written by my friend and colleague, Dr. Rochelle Caplan (although calling her a colleague is a bit laughable, given how distinguished she is!). In addition to her title above, Dr. Caplan studies thinking and behavior in pediatric neurobehavioral disorders (schizophrenia, epilepsy, attention-deficit hyperactivity disorder, high functioning autism) and related brain structure and function; unmet mental health need in pediatric epilepsy; and pediatric non-epileptic seizures.

I met Dr. Caplan many years ago when I first began working in healthcare as a parent co-chair of a national collaborative that worked to improve the quality of and access to healthcare for children with special healthcare needs, specifically epilepsy. I can still remember the talk that she gave at a plenary session during one of our large collaborative meetings, when nearly a hundred professionals -- neurologists, pediatricians, hospital administrators, family leaders, social workers and community and government officials -- gathered together to solve some of the most intractable problems that children with epilepsy and their families face. During that talk, Rochelle spelled out some grim statistics about the effects of epilepsy on mothers and siblings of children with seizures, statistics that were at once alarming to me and affirming, albeit in a strange way. I remember having to take a break from the subsequent meetings at the conference so I could go upstairs to my hotel room, where I lay on my back staring at the ceiling, absorbing the fact that yes, what I was doing was incredibly difficult and traumatic. I wasn't not coping but rather doing something very, very difficult. That acknowledgement, coupled with the statistics, was enormously helpful to me in countless ways, including psychic, and I was fortunate to become friends with the doctor as we lived not far from one another in Los Angeles.

I recently saw Rochelle again after a period of a few years, and we had the chance to catch up -- both personally and professionally, when I learned that she had just co-authored a book titled "How Many More Questions: Techniques for Clinical Interviews for Young, Medically Ill Children." I so look forward to reading her book but was very impressed by her impassioned plea following the massacre in Connecticut and spelled out in the linked article.

Please feel free to spread this article around, and I look forward to a great discussion here.

Snow Day

Amden, Switzerland, 2007

I'm surprising the boys this morning and not waking them up for school. It's raining here in Los Angeles and since we never have snow days, I'm calling one. We need a mental health day -- I think chocolate chip cookie-making is in order, perhaps a viewing of True Grit, and pajamas all day.

And maybe we'll listen to this:

I know what you're saying,

In response to some comments on my last post:


I know what you're saying, but studies like these HAVE been done and finished years and years ago. Physicians, parent advocates and those who advocate for children with special healthcare needs have been talking about this stuff for decades -- and have quantified it as well. You can google mental health statistics for siblings of those with epilepsy and find pretty grim information dating back decades -- statistics that show depression, mental health issues, even increased rates of suicide in boys.  I sat on the board of a non-profit that worked toward a cure for epilepsy and pushed for funding a study that helped siblings and mothers of children with epilepsy. The physicians on the board basically laughed it off the table. I think that partly speaks to the understanding of mental health issues in our culture and partly to the entrenched, rigid ways of the western medical world.


Interestingly, epilepsy and its effect on families is one of the most poorly understood and funded of all diseases -- for a myriad of reasons.


I don't hold any hope that money will EVER be allocated for families of children with special needs -- as we speak, any money that has been allocated is not just dribbling but actually gushing away. Obvious studies like this one will probably only serve to affirm what most of us feel -- and that's important. I doubt that they will be able to be used, though, for anything other than increased awareness. And while that's important, it's overwhelming to those of us who know it to be obvious.