ERNIE KAYE WAS DIAGNOSED WITH ALOPECIA AREATA, a common autoimmune skin disease causing hair loss on the scalp, face, and sometimes on other areas of the body. It affects as many as 6.8 million people in the U.S. alone. Mr. Kaye and his family found hope, and guidance in the National Alopecia Areata Foundation (NAAF). According to Mr. Kaye, the NAAF “educated [my family] about the psychological aspects of my disease [and] introduced my parents to other parents of kids with alopecia.” Once he was ready for the step, the Foundation also introduced him to other kids his age who were dealing with the same experience. That support enabled Mr. Kaye to open up to his friends and classmates about his disease. The result? “I received overwhelming support,” he says. “My classmates and peers were there for me.” But despite these steps in the right direction, Mr. Kaye was still disheartened by failed attempts to regrow his hair. And adding to that frustration was his worsening condition. He continued to lose more hair—now on his arms and legs—leading him to withdraw from previously beloved activities like playing on the school basketball team. The emotional struggle caused by the disease continued. Then, in the fall of 2017, Mr. Kaye says something clicked. “I simply stopped feeling sorry for myself, realizing that doing so was not productive,” he recounts. His resilience and acceptance of the disease inspired him to spearhead an effort to raise $250,000 to support the launch and growth of NAAF’s Youth Mentor Program. According to naaf.org, the Youth Mentor Program connects children living with alopecia areata and their parents to dedi- cated young adult mentors to formulate lasting bonds while providing support and guidance on dealing with the day-to- day challenges stemming from alopecia areata.
Alopecia Areata News Newsletter Number 168 | Spring 2018
CATHEDRAL ALUM ERNIE KAYE ’16 INSPIRES OTHERS THROUGH ART AND ACTION BY MEGAN BROWN Ernie Kaye’s journey with alopecia began in the spring of 2017 when he began losing his left eyebrow. Initially, Mr. Kaye struggled with the diagnosis and the rapid changes to his body and appearance. “As a 15-year-old freshman in high school, I was already consumed by how I looked,” Mr. Kaye recalls. “And this was an absolute tragedy.”
Photos by Ernie Kaye
Ernie on cover of Alopecia Areata News
Building Resilience Through Art
www.naaf.org
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As of the spring of 2018, Mr. Kaye has raised 60% of the goal he set to help fund the program. In addition to his work with the NAAF, Mr. Kaye has parlayed his photography skills with raising awareness about alopecia areata and spreading a message of acceptance and understanding. “I am in an advanced photography course at my school [and] for my project, I decided to take photos of fellow ‘alope- cians,’” Mr. Kaye says. “[I’ve] compiled photos of them—and myself—with and without their ‘armor’ to better raise awareness of who we are.” For those living with alopecia areata, ‘armor’ can be defined as hats, wigs, and scarves. Mr. Kaye’s project has not only provided him
with an artistic outlet and voice, but has helped others as well. Ann Hedges, who has been living with alopecia for 61 years, says she feels Mr. Kaye gave her “permis- sion … to be ‘out there’ and feel good about it.” Recently, he returned to Cathedral School for Boys to speak to Upper School students about his story. He shared his journey and the insights he has gained about being different through the lens of alopecia. During what was his first-ever public speaking experience, Mr. Kaye shared a message of acceptance and inclusion with current Cathedral students. “It was extraordinary,” he says.
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