Higher epilepsy consciousness could possibly be so simple as a stroll on the seashore, thanks to 1 New Jersey man.
Kyle Adamkiewicz, 33, has lived with epilepsy since being identified at age 6. He’s now combining his love of artwork with the ability of nature to assist convey his seizure dysfunction into the highlight.
In Oct. 2022, Adamkiewicz started amassing seashells from the New Jersey shore, then portray and adorning them with heartfelt messages seeking a remedy. He locations his artistic endeavors alongside the seaside boardwalks within the hopes that they are going to encourage strangers to unfold the phrase — and the shells.
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“It began with simply portray a couple of shells, and I figured nobody would discover them,” Adamkiewicz stated in an interview with Fox Information Digital.
“After which I noticed folks posting them on-line, and writing so many good and constructive feedback concerning the shells and about discovering a remedy for epilepsy. That motivated me to maintain making increasingly and extra.”
“And now they’ve been across the total world.”
Adamkiewicz doesn’t drive, so his dad and mom — Chuck and Laurie Adamkiewicz — drive him to put his shells.
“Now we have shells with us within the automotive on a regular basis, and he locations them in several places, totally different cities,” his mom advised Fox Information Digital.
Adamkiewicz estimates that he is painted some 1,100 shells up to now.
Many embrace messages about discovering a remedy for epilepsy, however he has additionally created themed designs for varied events, like Shark Week and Halloween.
“Our total lounge consists of nothing however shells and paint,” joked Adamkiewicz’s mom.
Along with a hand-painted design, every shell comprises Adamkiewicz’s initials, the 12 months he adorned it and a QR code.
When folks discover the shells and scan the QR code, it takes them to an internet site. From there, they’ll entry Adamkiewicz’s Fb group, his Instagram account and a GoFundMe web page set as much as assist elevate funds for folks to get “seizure alert” canine.
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It additionally hyperlinks to the Epilepsy Basis web site, the place folks can study what to do in the event that they witness somebody having a seizure.
“Most individuals do not actually know how you can deal with somebody in the event that they’re having a seizure,” Adamkiewicz advised Fox Information Digital. “They only flip their again and stroll the alternative means.”
“One out of 26 folks on this planet have epilepsy, but it surely’s mainly a hidden illness that no one actually needs to learn about.”
The Adamkiewicz household has a map of the world hanging on the wall — with pushpins to mark the place the shells have been discovered, they advised Fox Information Digital.
Along with places throughout the U.S., shells have additionally been scanned in Mexico Metropolis, Greece, Italy, Panama, Canada, Nova Scotia, France, South Korea and Germany, Adamkiewicz stated.
“Folks will discover the shells and take them to these locations,” Adamkiewicz stated. “And generally folks will ask me for shells to take to wherever they’re touring.”
He is additionally partnered with the hospital to get youngsters with epilepsy concerned in his mission, bringing shells in for them to allow them to paint their very own designs.
Past serving to to discover a remedy, Adamkiewicz has a purpose of decreasing bullying of individuals with epilepsy.
“After I was rising up, if my dad and mom or brother weren’t there, I used to be all the time made enjoyable of at school and within the neighborhood,” Adamkiewicz stated. “Particularly proper after I had a seizure — the children would simply stare at me and make enjoyable of me.”
He went on, “I need folks to know it’s OK to be buddies with somebody with epilepsy.”
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At one level, throughout second and third grade, he estimates that he was having 100 seizures per day.
“It has been a really onerous and lonely life for Kyle, and really painful to see as a mom and father,” Laurie Adamkiewicz added.
The purpose, she stated, is that the shells will assist to make life just a little simpler for these with epilepsy — and their households.
Adamkiewicz’s mom recalled a person who posted a few private expertise on the Fb group.
“His son had handed away, and the person goes to the ocean each morning to say good morning to his son,” she stated. “And there was the epilepsy shell, and he stated he began crying. He stated it was identical to a present to him.”
She added, “You by no means know whose lives you are touching.”
Since age 12, Adamkiewicz has been a affected person at NYU Langone’s Complete Epilepsy Heart, one of many largest packages within the nation, the place he is had a collection of mind surgical procedures.
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In April, he underwent a process to implant a responsive neurostimulation (RNS) system in his mind, which can collect knowledge about his seizure exercise.
Neurosurgeon Peter Rozman, M.D., carried out the surgical procedure alongside his mentor, Werner Ok. Doyle, M.D., Adamkiewicz’s longtime physician.
“This method has the capability to truly report mind exercise within the type of electrical waves that detect when the seizures begin, so it will possibly ship an impulse to the mind at the moment, with the purpose of aborting the seizure,” Rozman stated in an interview with Fox Information Digital.
The info collected by the system is distributed to the neurologist, who makes use of that data to program the system to higher seize and deal with the seizures, he stated.
“Over time, folks see increasingly enchancment of their seizures,” Rozman stated.
Rozman praised Adamkiewicz’s seashell mission, emphasizing the significance of accelerating consciousness of the situation.
“And it offers him an outlet, too,” the physician stated. “Having different folks to speak about your situation with and being a part of a group may be very useful.”
In a means, Rozman stated, Adamkiewicz is popping his epilepsy into a great factor.
“It’s useful on each side — for elevating consciousness and likewise permitting Kyle to have extra management and to drive the story,” he stated.
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“It may be such a devastating factor to need to cope with every day, and having some form of license and management over that’s actually essential.”
Adamkiewicz agreed that his mission has been a therapeutic endeavor for him.
“If it’s been a very unhealthy day, that is principally what I’ll be doing,” he stated.
“Like earlier as we speak, I used to be portray some shells and had my ear buds in, simply listening to some music. I am simply so targeted on portray the shells that I zone everyone else out.”
Adamkiewicz and his mom are additionally engaged on a youngsters’s e-book to show youngsters extra about epilepsy and what to do if somebody is having a seizure.
“When somebody has a seizure, it may be scary to different youngsters,” stated Laurie Adamkiewicz mom.
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“So the purpose is to get some data on the market, to take the stigma away from the one that has epilepsy … We wish to educate folks how you can be form, and how you can assist.”