My daughter has epilepsy and there is no reason to keep quiet about it

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Too often we say the words in hushed tones. Epilepsy. To attack. 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. Last year I wrote about her journey.

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 can last forty-five seconds. The longest was 30 minutes.

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It’s a life-changing condition. Repeated seizures can cause significant learning delays and behavioral problems, but thanks to aggressive treatment, we are happy to report that Kyla, now 6, is doing well.

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

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

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

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“We believe that stigma significantly impacts our ability to raise funds,” said 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 address the lingering stigma surrounding 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 cause additional trauma. Privacy is an important consideration for anyone battling a disease, but it should never border on embarrassment.

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

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New drugs, surgical treatments and genetic discoveries all hold promise. Because seizures can be so disruptive, new rescue drugs may help people with epilepsy gain a greater sense of independence. And diet therapy is increasingly seen as an effective option when medications fail.

Our daughter was on an extreme form of the keto diet for two years and she has been seizure free for over two years. Remarkably, her brain scans no longer show signs of epilepsy.

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Is she cured of epilepsy? “Yes!” says her physician, neurologist Dr. Eric Kossoff. He directs the Pediatric Ketogenic Diet Center at the Johns Hopkins Children’s Center in Baltimore.

However, for so many, epilepsy will remain a lifelong condition. Still, prompt diagnosis and treatment can be critical. “Studies show the earlier the diet is started in the course of epilepsy, the more likely it is to work.

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We strongly advocate for its consideration after two epilepsy drugs have failed,” says Kossoff. While he sees a wide range of outcomes, he also knows firsthand how patients and parents respond to a diagnosis of epilepsy. “Yes,” he says, “unfortunately, stigma is definitely a problem. Adolescents with epilepsy, in particular, are often unwilling to discuss their epilepsy with peers.”

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As parents, my wife and I are cautiously optimistic, but despite our joy at our daughter’s progress, we are always on the lookout for signs of seizures. That fear, rational or not, may never go away.

We are vigilant, but at the same time we also try to be more vocal. And in November and beyond, please say it with us: epilepsy.

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