Katrina Racine was 7 when her mother was brushing her hair and noticed a spot the size of a half dollar where hair was missing.
"It started coming out in clumps. So she took me to the doctor," Katrina said.
The doctor told her to get a haircut. Perhaps the weight of her thick blonde curls that tumbled down to her waist had something to do with the hair loss.
That wasn't it, though.
Within six weeks, her hair was gone.
"We got the hair cut, but it just kept coming out, so they diagnosed me with alopecia," Katrina said.
She is now 12 and a seventh-grader at Global Concepts Charter School in Lackawanna, where she lives.
Alopecia areata is an autoimmune disease that causes hair loss on the scalp and face, and sometimes other parts of the body. There is total hair loss on the scalp, eyebrows, lashes and other parts of the body. More than 6.6 million people in the United States have or will develop alopecia in their lifetimes, according to the National Alopecia Areata Foundation.
The disease does not make patients feel ill or result in life-threatening health problems. The hair loss is usually a temporary condition, but alopecia can result in permanent baldness.
"There's no telling if her hair will come back or not. Its kind of up in the air," said Katelyn Piraino, Katrina's mother.
While Katrina's friends at Global Concepts are supportive and love her just the way she is, she also would like to meet other girls like her in the Buffalo area.
"Now that Katrina is getting older, it's important that she can see people from other walks of life and hear their story, and share her story," her mother said. "It would be good for her to talk to others too who are just experiencing this."
She had a pen pal through the National Alopecia Areata Foundation, but they lost touch.
Katrina, with her family, will host her own lunch at 1 p.m. April 29 at J.P.'s Pub on Lakeview Road in Lakeview.
"I hope to just meet more people like me and become friends with them," Katrina said.
"So far, the response we've gotten, it's been a lot of children, which is amazing. We're looking to reach everybody, men, too," her mother said.
She hopes there is interest for local people to develop a network of support.
"It's hard for people to find one another," said Thea Chassin, the founder of Bald Girls Do Lunch, who will attend Katrina's lunch. "Doctors can't introduce patients to one another."
Chassin started the organization when she noticed at mixed support groups that many wanted to help parents, but women often fell through the cracks. But they blossomed in the informal setting of lunch. She said just knowing they are not alone helps people with alopecia areata. And newcomers can benefit from the advice of others.
Katrina said she would like to help other children with alopecia, "maybe some of the kids who are super scared."
She also thinks her mother might be able to help out some of the parents.
Katrina is a member of the Junior National Honor Society, and she loves to sing. While she took dance for seven years, chorus is her favorite subject at school. She is lead soprano. She can be found singing in the shower and singing in her room, and she dreams of being on NBC's "The Voice."
"I sing all the time. Singing just calms me," she said.
It's no fun not having hair. Many people think she is sick with cancer, and she has had her share of teasing.
"They've laughed at me, they've called me bald and ugly before," she said of children, some older, some younger, some the same age as her.
"It hurts," Katrina's mother said, "but, I think it's taught Katrina to be very understanding of everybody's differences."
"It's just kind of hard. Most people don’t understand about it, anything about it," Katrina said. "They don't know what it is so why would they be doing that kind of thing?"
Katrina did undergo treatment, including creams and steroid injections in her head, for three years.
"She had 18 shots the one time. She's a tough girl. She stopped those because they weren't successful," Piraino said.
Katrina did wear a wig, but "it's kind of itchy and annoying," she said. "I hardly even wear hats or headbands anymore."
"It's good to see her comfortable in her own skin. Because for awhile, she was a little embarrassed to go to school and be different. But her friends haven’t treated her any differently," Piraino said.
About a month ago, Katrina was thinking about her alopecia, and how everyone is obsessed with makeup and jewelry and looks.
She wrote this: "Beauty cannot buy a house, food water or clothes, so why do we need it so much?"