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Too often we say the words quietly. 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 years old. I wrote about his journey last year.
The onset was sudden, the impact shocking. We quickly lost count of how many seizures she had. A typical might last forty-five seconds. The longest was 30 minutes.
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It is a life changing condition. Repeated seizures can lead to significant learning delays and behavioral issues, but thanks to aggressive treatment, we’re happy to report Kyla, now 6, is thriving.
And yet, we still struggle with words. There is something about epilepsy that makes people feel uneasy, beyond what we typically see with other conditions. There is something mysterious about this, even for those of us who have been deeply affected by the disease.
“We believe stigma has a significant impact on our ability to fundraise,” says Beth Dean, CEO of Cure Epilepsy, which has funded research for more than 20 years.
Her campaign this month is #SayEpilepsy, an effort to tackle the lingering stigma that surrounds the disease. “Epilepsy needs to come out of the shadows,” she says, “and it needs a voice.”
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For people with epilepsy, stigma can create additional trauma. Confidentiality is an important consideration for anyone dealing with an illness, but it should never border on shame.
More than three million people in this country suffer from epilepsy. Treatment success rates vary dramatically, but there has been progress. “We now believe that 30 to 40 percent of epilepsies are genetic, and that number could increase as our understanding grows,” adds Dean.
New drugs, surgical treatments and genetic discoveries all hold promise. Because seizures can be so disruptive, new rescue medications may help people with epilepsy achieve a greater sense of independence. And diet therapy is increasingly seen as an effective option when medication fails.
Our daughter completed two years on an extreme form of the keto diet and she has been seizure free for over two years. Remarkably, his brain scans no longer show any signs of epilepsy.
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Is she cured of epilepsy? “Yes!” says her doctor, neurologist Dr. Eric Kossoff. He directs the Pediatric Ketogenic Diet Center at Johns Hopkins Children’s Center in Baltimore.
For so many people, however, epilepsy will remain a lifelong illness. Yet prompt diagnosis and treatment can be essential. “Studies show that the earlier the diet is started in epilepsy, the more likely it is to work.
We strongly urge its consideration after failure of two anticonvulsants,” says Kossoff. While he sees a wide variety of outcomes, he also knows firsthand how patients and parents respond to a diagnosis of epilepsy. “Yes,” he says, “unfortunately, stigma is definitely an issue. Teenagers with epilepsy in particular are often reluctant to discuss their epilepsy with their 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 still looking for signs of crises. This fear, rational or not, may never go away.
We are vigilant, but at the same time we also try to be more vocal. And throughout November and beyond, say it with us: Epilepsy.