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    Teen with rare skin condition forced to avoid sunlight

    September 22, 2018

    ARNOLD, Pa. (AP) — Mackinly “Mack” Adams avoids the sun at all costs.

    He never leaves his Arnold home without gear that covers most of his body.

    A baseball hat and long black UV resistant sleeves, which he slides up over both arms, go on first. Those are followed by a special pair of polarized sunglasses, which he hangs from the neck of his T-shirt. He attaches a hood to the back of his hat, which falls down to cover his neck and his ears, and completes the outfit by placing a pair of black, fingerless gloves on his hands.

    The process may seem rigorous, but to Adams it’s just normal.

    At age 10 he was diagnosed with a rare skin condition known as Actinic Prurigo.

    Any exposure to the sun or fluorescent lights could make him very sick.

    Without his protective gear, he risks suffering mood changes and can’t think clearly. He’ll also experience physical symptoms such as migraines, and bumps and rash-type splotches will show up on his face and his hands.

    “I can’t think. I can’t make decisions. I can’t take tests,” said Adams, 18. “Then I get something very close to a rash. I avoid it at all costs.”

    The condition affects his immune system, which makes it easier for Adams to get sick.

    Because of this, he was unable to attend middle school and high school. Instead, he was cyber-schooled beginning in fifth grade.

    “Going to a school with fluorescent lights was a strain in itself, but his catching everything on top of it made it even harder,” said his mom, Kelly Adams. “He becomes even more sensitive to light when his immune system is in full swing because he is sick.”

    Adams graduated from Valley High School in May. He wanted to go to college, but this time in a normal campus setting — in a classroom among other students and teachers.

    Tasked with this rather difficult undertaking, Adams and his mom began exploring options to see if that would be possible for him.

    They lucked out with Penn State New Kensington, a place that was more than willing to accommodate his uncommon affliction.

    “It was beyond what we thought,” Kelly Adams said.

    Transforming the campus

    Adams applied to a small number of colleges, but really wanted to go to Penn State New Ken.

    He liked that the Upper Burrell campus is small and close to home. Plus, it offers the major he wants: Information Sciences and Technology.

    After he was accepted, the family reached out to campus administration to see if Adams might be able to attend classes on campus.

    “Mack’s mom, Kelly — who is fantastic — reached out to me via email about Mack,” said Adam Robinson, Learning Center coordinator. “That’s how it all started.”

    Robinson met with Randy Tressler, the campus’ maintenance supervisor, to see what could be done. Tressler did some research, and Robinson contacted the family again to see if LED lights would be safe for Adams.

    Kelly Adams, 47, was floored. She said it has been difficult to get even doctors to research her son’s condition, let alone a college staffer.

    ″(Randy’s) been wonderful,” she said. “He’s been a godsend.”

    At that point, the campus’ Robert D. Arbuckle Technology Building had been converted to LED lights. Kelly Adams said she would have been happy if all her son’s classes could have just been held there, but Tressler said that wasn’t good enough.

    He said Adams needs to have access to all of the things normal students would, like the cafeteria, the library, the computer lab, the main lounge and classrooms.

    “We think it’s important not just for Mack — for any special needs student — to have the complete experience of campus life,” Tressler said. “We don’t want to limit them to any specific building or any specific space if we can avoid that.”

    The ever-evolving campus now has “safe zones” specifically for Adams. Classrooms, hallways and lobbies have been outfitted with non-fluorescent lights that allow Adams to make his way around without his protective gear.

    “They really did a lot this summer,” Adams said. “There’s still a lot more to be done, but this was a great start so I could start my freshman year.”

    Officials said the campus is in the process of converting all of its lights over to LED, and Adams’ condition has helped expedite that.

    “The impact that we are going to have on his life, for as long as he stays here, is just incredible,” Chancellor Kevin Snider said.

    Rare diagnosis

    Adams’ family realized something was different about Mack when he was in second grade.

    A student at Cheswick Christian Academy, Adams started getting migraines every day. Some were so bad his family took him to an emergency room.

    Kelly Adams asked her son’s primary care doctor whether Mack’s headaches could be related to fluorescent lights at the school. He told her that was a real possibility.

    “A lot of doctors, he called them good gamblers, because they don’t bet against the odds, but somebody has to have the one-in-a-million patient, and he really thought there was something to it,” she said.

    “And we started down this road.”

    The family spent roughly four years trying to figure out what was affecting Mack, taking him to see more than 15 doctors in at least five states.

    Dr. Andy Gunter, a pediatrician in Charlotte, N.C., finally diagnosed him. He took the case on a request from a mutual friend who knew the family through Camp Sundown, a camp for kids with photosensitive disorders.

    It took Gunter about a year to reach a diagnosis. He couldn’t say how many people have the total sensitive skin disorder Actinic Prurigo, but said it’s “really rare.”

    The genetic condition prompts the body to see sunlight as something foreign, so it overreacts to it — almost like an autoimmune response.

    While Adams’ case is manageable, it isn’t curable, Gunter said. He will likely live with it his entire life.

    Kelly Adams said receiving a diagnosis was “a big relief.”

    “Having so many doctors tell you they didn’t know was scary,” she said. “Now, after all these years, it just is normal for us.”

    The family has since made friends with other people who suffer from skin disorders and are planning a vacation next summer with other kids they met at Camp Sundown. They have a Facebook support group for people with Actinic Prurigo, and also are planning a nonprofit to help support people with skin disorders.

    Gunter said a diagnosis can make people feel like they’re not alone and connect with people dealing with similar situations.

    “That by itself can make a huge difference in a parent’s life, but also in the kid’s life,” he said.

    A costly affliction

    Adams’ family has completely transformed their home with about $10,000 in renovations.

    Each window is tinted to filter out UV rays and reduce glare, and every light bulb has been converted to LED. They added a roof out back and enclosed their patio with polycarbonate coverings, which filter out UV rays.

    The family also tinted the windows on Adams’ car and converted the garage into what they call a “night club” — complete with a fog machine. That’s one of the places Adams and his friends hang out.

    Neighbors have been open and understanding.

    “All the kids in the neighborhood growing up . knew Mack couldn’t go outside, so everybody would come here until it was dark and then we would have the yard with kids jumping on the trampoline (until) . 1 in the morning,” Kelly Adams said.

    “The neighbors must love us,” Mack replied.

    “They do,” his mom said back. “We have such great neighbors. They all understand what’s going on, and nobody ever complained. They’re always fine with it.”

    The high costs to deal with such a disorder are also reflected at PSNK. What started out as a $25,000 project quickly morphed into one well over $100,000.

    “We keep identifying spaces (around campus) and upgrading them to make them safe zones for Mack to go into,” Tressler said.

    Day-to-day life

    Adams takes several medications, such as antihistamines, daily to offset the effects of his condition.

    He sees a specialist and an eye doctor to make sure a medication he takes doesn’t hurt his eyes.

    The family has to watch which stores they shop at and what restaurants they dine in depending on the lights.

    Even going to the bathroom at the Pittsburgh Mills mall in Frazer can cause a reaction because some of the hand dryers emit UV light.

    “He goes and he comes out with soaking hands going, ‘They changed the hand dryers, I can’t use it,’” his mom said.

    Adams can go to places such as Kennywood, but it has to be close to sunset — he can’t stay there all day.

    “I would still be able to go there and have some flexibility, but I won’t be able to really think,” he said.

    While some people may see Adams’ condition as isolating, he said he has never felt that way. He understands his limitations, and attributes his ability to overcome his disorder to his outgoing personality.

    “I really was a people person. I really talked to anyone, introduced myself, really, all the time,” he said. “I don’t find that my condition really damages that.”

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    Information from: Tribune-Review, http://triblive.com

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