Shannon Leahy, Giselle Mustafich and Belinda Lee, all members of Girl Scout Troop 1050 in East Meadow, have dedicated their Silver Award project to a personal cause.
Since February 2018, the girls, all eighth-graders at Woodland Middle School, have worked toward the award, which is the highest honor an eighth-grade Girl Scout can earn, and requires the completion of a community-oriented service project.
Shannon, Giselle and Belinda focused on alopecia, an autoimmune disease in which the body attacks its hair follicles. Belinda was researching charities and causes when she learned about the disease — not knowing that Shannon, her close friend, had watched her mother go through it for three years.
“When we first decided, I had a brief understanding of it,” Belinda said. “I just knew people lost their hair.”
Patty Leahy, who is also the troop leader, said she also knew little about the disease until she was diagnosed with it. In December 2015, her hairline began receding rapidly. When she took a shower, clumps of her hair came out in her hands. Eventually she lost all the hair on her body, and now she wears wigs and draws in her eyebrows with makeup.
Like many autoimmune diseases, alopecia depletes vitamins at the site of its attack. For Leahy, the result was the loss of her fingernails, which rotted off her fingers.
“We didn’t think it would be as severe as it got,” she said. Leahy was specifically diagnosed with alopecia universalis, the most extreme of three varieties of alopecia, which causes hair loss over the entire body. The other two types are alopecia areata, which results in hairless patches on the head, and alopecia totalis, in which all hair on the head and face is lost.
Shannon said her mother once had beautiful red hair that she styled and groomed. “Her hair was her thing,” she said. “Everybody loved it.”
And when her hair fell out, Patty Leahy said, her confidence went with it, replaced by anxiety and stress. When she was out in public, she felt as if people were staring at her head, and she still worries that everybody she meets can tell she is sick, even though she never takes off her wig.
“I feel naked without my hair,” she said. But her attitude changed when her daughter dedicated her Silver Award to the cause. “I was very ashamed of it and embarrassed for a long time,” Patty said. “Now I want to be an advocate.”
The girls decided to collect wigs to donate to patients, “but it was so hard, because wigs are so expensive,” Belinda said. She explained to the Herald that insurance companies classify alopecia as a cosmetic disorder, and don’t cover the cost of treatment or wigs.
Patty Leahy said she spent roughly $7,000 on her new look. Cheaper wigs were made of synthetic hair, but eventually fell apart. Others were blends of human hair, but even those don’t last, she said. Ultimately, she found the Roslyn-based nonprofit Hair We Share, which gives wigs to alopecia patients free.
The Girl Scouts reached out to the organization, and began planning a hair drive at Lemon Tree, in East Meadow, on March 31 from 9 a.m. to 5 p.m. Haircuts will be free, and will come with an alopecia awareness T-shirt.
In addition to the drive, the girls have been spreading awareness of their cause in other ways. While trick-or-treating on Halloween, they handed out fliers about alopecia and the hair drive. In December, they sold handmade hair clips and fresh-baked cookies at a community fair at McVey Elementary School in East Meadow.
They talked about their cause on a recent episode of the Helping Hands Podcast, run by East Meadow resident Dan Ratkewitch, which highlights local philanthropic efforts. And they created an Instagram account called @alopeciahairdrive to track their progress.
Setting an example for the drive, Belinda donated 10 inches of her hair to the nonprofit in December. She called the experience uplifting. “You just know that your hair will grow back,” she said, “but there are people like Patty who don’t know if their hair will.”
The girls toured Hair We Share and saw how the wigs are made. Donations must be at least eight inches long and trimmed in ponytails rather than shaved. Each wig uses roughly eight ponytails from those who donate.
Along the way, they have also learned that many celebrities have or had alopecia, they said, including Tyra Banks, Viola Davis, Wendy Williams and the late Christopher Reeve.
Silver Projects are meant to teach the girls philanthropy and dedication, but the experience has been just as transformative for their troop leader, she said. “I want to help people with the disease,” Patty Leahy said. “I’m still not 100 percent comfortable, and it’s still a challenge. But I’ve come to the point where I’m not ashamed anymore.”
The Girl Scouts are still looking for donors to contribute to their hair drive. To make an appointment, call Patty Leahy at (516) 816-7061.