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Crowning Jewel

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Photograph by Jared CastaldiFor years, it was a tradition in the Martell home in Milford to gather before the television and watch the Miss America Pageant, and when Kayla Martell was 7, she and her parents, Rhonda and Ron, watched a ballet performance by Heather Whitestone that was so breathtaking, it turned the audience’s approval into thunder.

Many in the audience did not know that Whitestone could not hear them. She had lost her ability to hear at 18 months old, but later that evening, the Martells watched Whitestone crowned with the title that would inspire millions of people to pursue their dreams in spite of barriers.

Over the past few years, Kayla, 22, has also become an inspiration to many, a story that reached a high point in June, when she was named Miss Delaware 2010. When she appeared on stage Jan. 15 at the Miss America Pageant, she represented not only Delaware, but 2 percent of the world’s population, including 4.7 million Americans who, like her, have been diagnosed with alopecia areata.

At age 10, Martell awoke one morning to discover a silver dollar-sized bald spot on the top of her head, a condition that was soon diagnosed as alopecia areata, an autoimmune skin disease that results in the loss of hair on the scalp and elsewhere on the body. The condition is neither contagious nor life threatening, and those with alopecia areata live otherwise healthy lives.

What started as one patch eventually progressed to total scalp hair loss, and at an age when most young girls are first experimenting with hair coloring, perms and new hairstyles, Martell was walking the hallways of her middle school with only peach fuzz on her head. Her parents asked her if she wanted to be fitted for a wig, but when she tried one on, it felt like a cosmetic covering that looked detached from who she was.

“My parents asked me, ‘Do you want a wig?’” Martell says. “I told them ‘No, it feels like I’m wearing a winter hat. I don’t mind that I’m bald, and neither should anyone else.’ Then we all moved on with our lives.”

Although alopecia areata is considered a physical disease, its cosmetic appearance is similar to one of a patient undergoing chemotherapy, and therefore wrongly assumed to be life-threatening like cancer.

“In truth, however, it has no impact on your overall health and ability to think cognitively,” says Lisa Butler, vice president of communications for the National Alopecia Areata Foundation (NAAF). “The biggest component of alopecia areata is in its emotional impact, based on the stigma of looking different, and not everyone is accepting of someone who looks different.”

Confidence may be cultivated by the individual but its source is usually planted by others, and in Martell’s case, “My parents never let me shed a tear, and they never let me sit and sulk and say, ‘Oh, woe is me,’” she says. When she was 11, she delivered a presentation to her sixth-grade class, “Hair Today, Gone Tomorrow,” where she spoke matter-of-factly about her condition.

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Martell was teased at first, but the comments quickly stopped. Her schoolmates saw that the girl who had lost her eyebrows, eyelashes and her hair was walking the hallways with an air of confidence. She played tennis and field hockey and took ballet lessons. She had boyfriends. She lived a normal life.

Martell says that there were many times her mother would ask Kayla to look at herself in the mirror and say, ‘I am beautiful.’ “The best thing we could do was to support her in whatever way we could,” Rhonda says. “I would look at her and feel that we needed to let her know that she’s a gorgeous young girl.

“The key was her accepting that she was blessed with this for a reason,” she adds. “From a young age, Kayla acted like, ‘This is me. I love myself. You need to love me for who I am.’”

Undeterred by her condition, Martell began entering local beauty pageants. At 13, she entered the Teen Miss Milford pageant with a borrowed dress and finished first runner-up. The next year, she was crowned Teen Miss Milford 2003. In 2006, she was named Miss Sussex County, Teen Miss Indian River 2007 and Miss Georgetown in 2008. In each of those years, she entered the Miss Delaware Pageant without a wig, and although she finished respectably in each of those four events, she did not place in the top four.

After the 2008 competition, her third, a contest judge approached Martell. “He asked me, ‘Do you want this, Kayla?’” she says. “I told him that I did, and then he told me that I was not going to get there without a wig. I was offended and hurt, and I couldn’t believe what he was telling me. It was as if he were asking me to hide myself behind something.”

At that point, Martell made the decision to leave the world of pageant competition and dedicate herself to her college career, as well as her position as a spokeswoman for the NAAF, which supports research to find a cure for the condition, supports those who live with it and educates the public. During the “Let Your Hair Down” fundraiser for the Foundation in 2008, she spent time with her friend Lilliana Hakim, now a 6-year-old girl from Wall, N.J., who was diagnosed with alopecia areata when she was 2.

“Lilliana asked me if I was going to compete in Miss Delaware again next year,” Martell says. “When I told her that I wasn’t, she asked me why not, and after I gave her all kinds of reasons, she looked up at me and says, ‘But you’re my Miss America.’ I realized what my competing had meant to her. In a way, she was saying that I needed to represent who I was, not what someone else asked me to be. I have a 5-year-old girl to thank for everything.”

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Martell was named Miss Newark in 2009 and competed in that year’s Miss Delaware contest for the fourth time—now wearing a blond wig in competition—and finished in the top 10. “Going into the 2010 Miss Delaware Pageant, I felt at peace, knowing that I had done everything I needed to do to prepare,” says Martell, who had spent countless hours at the gym and at a local dance studio to prepare for the event. “I walked out of my pre-interview with the judges, and I began to cry. I felt for the first time, they truly got to know me, because for the first time, I really let them know who I was.”

When she was named Miss Delaware, Martell invited Lilliana and her sister Isabella to accompany her on the initial runway walk. In addition to fulfilling her duties as Miss Delaware, Martell continues championing the cause of the NAAF.

At the 2011 Miss America Pageant, Martell used the foundation as a platform to promote awareness of the condition. She visits children’s hospitals, schools, youth groups and non-profit organizations.

“Kayla exemplifies the face of confidence, and we’re honored to have her with us,” Butler says. “She represents so many Americans, with the message that with or without hair, it’s what’s inside that shines through. When we have a spokesperson who is proud to go without her hair, it gives great justice to those who have it.”

Working tirelessly on behalf of others is nothing new to Martell. As a youngster, she became involved in the 4-H program in Kent County. In 2006 she founded Caps for YAPs (Youth Alopecia Patients) and since then has designed polar fleece hats and taught youths in local schools how to make hats for youngsters with alopecia.

In 2005, Martell started PLEDGE (People Learning to Eliminate Drugs by Gaining Education), which provides training to youth to become peer educators to other youth. She also helped to write into law Delaware House Bill 290, passed in 2008, which requires coverage for those who wish to purchase hair prostheses.

Now a senior at Marymount University, Martell is planning to pursue a master’s degree in communication for a career as a broadcast journalist. “Right now, my crown is my microphone,” she says. “I have a deep desire to affect change, because I’ve always believed in the principle that it’s not what we do for ourselves, it’s what we do for others. I’ve come to enjoy taking myself out of the equation.”

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Her Facebook page is crowded with messages from nearly every state in the nation, imploring her to continue to share her message.

“I come from parents who continue to believe in faith, and they always tell me, ‘God would never give you anything you couldn’t handle. You can push through and persevere through anything,’” Martell says. “That’s the message I share, that the way we survive is to look in that mirror and tell ourselves that we are strong and we are beautiful.”
 


A Medical Breakthrough

The June 2010 edition of Nature Journal published an article that shared what may be the most optimistic genetic research ever done to understand more about the factors that contribute to alopecia areata.

Led by National Alopecia Areata Foundation Scientific Advisory Council member Dr. Angela Christiano and using cases from the National Alopecia Areata Registry, a team of investigators from the Columbia University Medical Center discovered eight genes that contribute to alopecia areata, one of which has a possible role in the onset of the disease. The significance of this finding is that many of the genes found to be associated with alopecia areata are also associated with other autoimmune diseases, including rheumatoid arthritis, type 1 diabetes and celiac disease; all diseases with pre-existing treatments. This discovery is expected to lead to effective clinical trials. Currently, alopecia areata has no cure, and there is no 100 percent effective treatment for it.
 

Included in this discovery is the ability to now accurately predict the progression of the condition, using the number of genes associated with the disease as the marker.

Further, a genetic test has been created that can indicate the severity of disease. For the patient, this means that one will be able to determine the likelihood of his or her bald patch progressing to complete body hair loss.

Founded in 1981, NAAF is widely regarded as the largest, most influential and most representative foundation associated with alopecia areata. For more information about alopecia areata and the foundation, visit naaf.org. 

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