Better epilepsy consciousness could possibly be so simple as a stroll on the seashore, thanks to at least one 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 facility 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 looking for a remedy. He locations his artworks alongside the seaside boardwalks within the hopes that they may 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 individuals posting them on-line, and writing so many good and optimistic feedback concerning the shells and about discovering a remedy for epilepsy. That motivated me to maintain making increasingly more and extra.”
Kyle Adamkiewicz, proven above, now 33, has lived with epilepsy since he was identified at age 6. He’s combining his love of artwork with the facility of nature to assist elevate consciousness of his illness. (Adamkiewicz household)
“And now they’ve been across the complete world.”
Adamkiewicz doesn’t drive, so his dad and mom — Chuck and Laurie Adamkiewicz — take him to varied areas to put his shells.
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“We have now shells with us within the automotive on a regular basis, and he locations them in several areas, totally different cities,” his mom advised Fox Information Digital.
Adamkiewicz estimates that he is painted some 1,100 shells thus far.
Many embrace messages about discovering a remedy for epilepsy, however he has additionally created themed designs for varied events, like Shark Week and Halloween.
Adamkiewicz has painted over 1,000 shells thus far. “Our complete front room consists of nothing however shells and paint,” joked Adamkiewicz’s mom. (Adamkiewicz household)
“Our complete front room consists of nothing however shells and paint,” joked Adamkiewicz’s mom.
Along with a hand-painted design, every shell incorporates Adamkiewicz’s initials, the yr he embellished it and a QR code.
When individuals discover the shells and scan the QR code, it takes them to an internet site. From there, they will entry Adamkiewicz’s Fb group, his Instagram account and a GoFundMe web page set as much as assist elevate funds for individuals to get “seizure alert” canines.
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It additionally hyperlinks to the Epilepsy Basis web site, the place individuals can be taught what to do in the event that they witness somebody having a seizure.
“Most individuals do not actually know find out how to 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 other method.”
Along with a hand-painted design, every shell incorporates Adamkiewiczs’s initials, the yr he embellished it and a QR code. (Adamkiewicz household)
“One out of 26 individuals on the earth have epilepsy, however it’s principally a hidden illness that no person actually needs to find out 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 areas 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.
“One out of 26 individuals on the earth have epilepsy, however it’s principally a hidden illness.”
“Folks will discover the shells and take them to these locations,” Adamkiewicz stated. “And generally individuals 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 challenge, bringing shells in for them to allow them to paint their very own designs.
Touching lives
Past serving to to discover a remedy, Adamkiewicz has a objective of lowering bullying of individuals with epilepsy.
Adamkiewicz is pictured along with his mom, Laurie Adamkiewicz. In April, he underwent a process to implant a responsive neurostimulation (RNS) system in his mind, which can collect information about his seizure exercise. (Adamkiewicz household)
“After I was rising up, if my dad and mom or brother weren’t there, I used to be at all times made enjoyable of in class and within the neighborhood,” Adamkiewicz stated. “Particularly proper after I had a seizure — the youngsters would simply stare at me and make enjoyable of me.”
He went on, “I would like individuals to comprehend 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 laborious and lonely life for Kyle, and really painful to see as a mom and father,” Laurie Adamkiewicz added.
The objective, she stated, is that the shells will assist to make life somewhat simpler for these with epilepsy — and their households.
Adamkiewicz stated his seashell challenge has been a therapeutic endeavor for him. “If it’s been a extremely unhealthy day, that is principally what I’ll be doing,” he stated. (Adamkiewicz household)
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 similar to a present to him.”
She added, “You by no means know whose lives you are touching.”
Taking management
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 sequence 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 information 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.
Adamkiewicz and his mother, Laurie Adamkiewiz, are pictured with a few of his painted shells. (Adamkiewicz household)
“This technique has the capability to really report mind exercise within the type of electrical waves that detect when the seizures begin, so it could ship an impulse to the mind at the moment, with the objective of aborting the seizure,” Rozman stated in an interview with Fox Information Digital.
The information collected by the system is shipped to the neurologist, who makes use of that data to program the system to raised seize and deal with the seizures, he stated.
“Over time, individuals see increasingly more enchancment of their seizures,” Rozman stated.
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Rozman praised Adamkiewicz’s seashell challenge, emphasizing the significance of accelerating consciousness of the situation.
“And it offers him an outlet, too,” the physician stated. “Having different individuals to speak about your situation with and being a part of a neighborhood might be very useful.”
Every shell incorporates a QR code that an individual can scan to entry data, assets and fundraisers for epilepsy. (Adamkiewicz household)
In a method, Rozman stated, Adamkiewicz is popping his epilepsy into a very good factor.
“It’s useful on each side — for elevating consciousness and in addition 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 should cope with each day, and having some form of license and management over that’s actually vital.”
Adamkiewicz agreed that his challenge has been a therapeutic endeavor for him.
“We wish to educate individuals find out how to be variety, and find out how to assist.”
“If it’s been a extremely unhealthy day, that is principally what I’ll be doing,” he stated.
“Like earlier right this moment, I used to be portray some shells and had my ear buds in, simply listening to some music. I am simply so centered on portray the shells that I zone all people else out.”
Adamkiewicz’s shells have been discovered in lots of cities and international locations all over the world, together with in Paris, France. (Adamkiewicz household)
Adamkiewicz and his mom are additionally engaged on a kids’s ebook 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 kids,” stated Laurie Adamkiewicz mom.
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“So the objective is to get some data on the market, to take the stigma away from the one who has epilepsy … We wish to educate individuals find out how to be variety, and find out how to assist.”
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