My daughter has epilepsy and there’s no reason to be silent about it


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Too often we say the words in hushed tones.  Epilepsy.  Seizures.  We should be louder.

November is National Epilepsy Awareness Month and even now, the silence can be striking.

Our daughter, Kyla, was diagnosed with epilepsy when she was just three.  I wrote about her journey last year. 

Kyla Luzader. Photo by Nancy Anderson Cordell. Used with permission.

The onset was sudden, the impact was shocking.  We quickly lost count of how many seizures she had. A typical one might last forty-five seconds. The longest was 30 minutes.  

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It is a life-altering condition. Repeated seizures can cause significant learning delays and behavioral issues, but thanks to aggressive treatment, we’re happy to report that Kyla, now 6, is thriving.

And yet we still struggle with the words.  There is something about epilepsy that makes people uneasy, beyond what we typically see with other conditions.  There’s something mysterious about it, even for those of us who have been deeply affected by the disease.

Kyla Luzader, Doug Luzader, his wife, and Kyla’s medical team at Johns Hopkins, including Dr. Eric Kossoff, M.D. (center). 

“We believe that stigma impacts our ability to raise funds significantly,” says Beth Dean, the CEO of Cure Epilepsy, which has funded research for more than 20 years.  

Her campaign this month is #SayEpilepsy, an effort to tackle the persistent stigma that surrounds the condition. “Epilepsy needs to come out of the shadows,” she says, “and it needs a voice.” 

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For those diagnosed with epilepsy, the stigma can create additional trauma.  Privacy is an important consideration for anyone battling an illness, but it should never border on shame.

More than three million people in this country have epilepsy.  Treatment success rates vary radically, but there have been advances.  “We now believe that 30 to 40% of epilepsies are genetic, and that number may increase as our understanding develops,” adds Dean.  

New medications, surgical…



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