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My daughter has epilepsy and there is not any purpose to be silent about it


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Too typically we are saying the phrases in hushed tones.  Epilepsy.  Seizures.  We ought to be louder.

November is Nationwide Epilepsy Consciousness Month and even now, the silence will be hanging.

Our daughter, Kyla, was recognized with epilepsy when she was simply three.  I wrote about her journey final 12 months. 

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

The onset was sudden, the influence was surprising.  We shortly misplaced rely of what number of seizures she had. A typical one would possibly final forty-five seconds. The longest was half-hour.  

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It’s a life-altering situation. Repeated seizures could cause vital studying delays and behavioral points, however because of aggressive therapy, we’re pleased to report that Kyla, now 6, is flourishing.

And but we nonetheless battle with the phrases.  There’s something about epilepsy that makes individuals uneasy, past what we sometimes see with different circumstances.  There’s one thing mysterious about it, even for these of us who’ve been deeply affected by the illness.

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

Kyla Luzader, Doug Luzader, his spouse, and Kyla’s medical workforce at Johns Hopkins, together with Dr. Eric Kossoff, M.D. (heart). 

“We imagine that stigma impacts our means to boost funds considerably,” says Beth Dean, the CEO of Remedy Epilepsy, which has funded analysis for greater than 20 years.  

Her marketing campaign this month is #SayEpilepsy, an effort to deal with the persistent stigma that surrounds the situation. “Epilepsy wants to come back out of the shadows,” she says, “and it wants a voice.” 

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For these recognized with epilepsy, the stigma can create extra trauma.  Privateness is a crucial consideration for anybody battling an sickness, but it surely ought to by no means border on disgrace.

Greater than three million individuals on this nation have epilepsy.  Therapy success charges range radically, however there have been advances.  “We now imagine that 30 to 40% of epilepsies are genetic, and that quantity might enhance as our understanding develops,” provides Dean.  

New medicines, surgical therapies and genetic discoveries all maintain promise.  As a result of seizures will be so disruptive, new rescue medicines might help these with epilepsy obtain a better sense of independence.  And weight-reduction plan remedy is more and more seen as an efficient possibility when medicines fail.  

Our daughter accomplished two years on an excessive type of the keto weight-reduction plan and she or he has been seizure-free for nicely over two years.  Remarkably, her mind scans not present any indicators of epilepsy. 

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Is she cured of epilepsy?  “Sure!” says her physician, neurologist Dr. Eric Kossoff. He leads the Pediatric Ketogenic Weight loss program Heart at Johns Hopkins Kids’s Heart in Baltimore.  

For thus many, although, epilepsy will stay a lifelong situation.  Nonetheless, fast prognosis and therapy could also be essential.  “Research present the sooner the weight-reduction plan is began in the middle of epilepsy, the extra doubtless it’s to work.  

We strongly advocate for its consideration after two antiseizure medicine have failed,” Kossoff says. Whereas he sees all kinds of outcomes, he additionally is aware of firsthand how sufferers and oldsters react to an epilepsy prognosis. “Sure,” he says, “sadly, stigma is certainly a problem. Adolescents with epilepsy particularly are sometimes unwilling to debate their epilepsy with friends.”

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As mother and father, my spouse and I are cautiously optimistic, however regardless of our pleasure over our daughter’s progress, we’re at all times in search of indicators of seizures.  That concern, rational or not, might by no means go away.  

We’re vigilant, however on the identical time, we are attempting to be extra vocal, too.  And all through November and past, please say it with us: Epilepsy.



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