Larger epilepsy consciousness might be so simple as a stroll on the seaside, 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 facility of nature to assist deliver his seizure dysfunction into the highlight.
In Oct. 2022, Adamkiewicz started gathering seashells from the New Jersey shore, then portray and adorning them with heartfelt messages looking for a treatment. He locations his artworks alongside the seaside boardwalks within the hopes that they’ll encourage strangers to unfold the phrase — and the shells.
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“It began with simply portray a number of shells, and I figured nobody would discover them,” Adamkiewicz stated in an interview with Fox Information Digital.Â
“After which I noticed folks posting them on-line, and writing so many good and optimistic feedback concerning the shells and about discovering a treatment for epilepsy. That motivated me to maintain making increasingly 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 places to put his shells.
“We have now shells with us within the automotive on a regular basis, and he locations them in numerous places, totally different cities,” his mom advised Fox Information Digital.
Adamkiewicz estimates that he is painted some 1,100 shells up to now.
Many embody messages about discovering a treatment for epilepsy, however he has additionally created themed designs for numerous events, like Shark Week and Halloween.
Adamkiewicz has painted over 1,000 shells up to now. “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 adorned it and a QR code.
When folks discover the shells and scan the QR code, it takes them to a web 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 folks to get “seizure alert” canines.
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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 one can deal with somebody in the event that they’re having a seizure,” Adamkiewicz advised Fox Information Digital. “They simply flip their again and stroll the other means.”
Along with a hand-painted design, every shell incorporates Adamkiewiczs’s initials, the yr he adorned it and a QR code. (Adamkiewicz household)
“One out of 26 folks on the planet have epilepsy, but it surely’s principally a hidden illness that no one actually desires 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.
“One out of 26 folks on the planet have epilepsy, but it surely’s principally a hidden illness.”
“Folks will discover the shells and take them to these locations,” Adamkiewicz stated. “And typically folks will ask me for shells to take to wherever they’re touring.”
He is additionally partnered with the hospital to get children 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 treatment, 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 is able to collect knowledge about his seizure exercise. (Adamkiewicz household)
“Once 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 would like folks to know it’s OK to be pals 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 objective, she stated, is that the shells will assist to make life a bit 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 very dangerous 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 Middle, one of many largest applications 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 is able to collect knowledge about his seizure exercise.
Neurosurgeon Peter Rozman, M.D., carried out the surgical procedure alongside his mentor, Werner Okay. 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 truly document mind exercise within the type of electrical waves that detect when the seizures begin, so it might probably 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 info to program the system to raised seize and deal with the seizures, he stated.
“Over time, folks see increasingly 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 folks to speak about your situation with and being a part of a neighborhood may be very useful.”
Every shell incorporates a QR code that an individual can scan to entry info, assets and fundraisers for epilepsy. (Adamkiewicz household)
In a means, Rozman stated, Adamkiewicz is popping his epilepsy into an excellent 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.Â
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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 challenge has been a therapeutic endeavor for him.
“We need to train folks how one can be form, and how one can assist.”
“If it’s been a very dangerous 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 nations around the globe, together with in Paris, France. (Adamkiewicz household)
Adamkiewicz and his mom are additionally engaged on a kids’s e-book to show children 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 info on the market, to take the stigma away from the one that has epilepsy … We need to train folks how one can be form, and how one can assist.”
