A party with purpose: Girls with hair-loss disorder getting new locks

Kiersten Koelzer and Lilia Sterkel bubbled with delight as they twirled in tutus and tried on wigs amid a party atmosphere at Picture Me Makeover Studios in Kalispell last week.

A few of their friends and siblings got the royal treatment, too, by getting their faces painted and having full run of the wig studio.

This was a princess party with a purpose — and a day to celebrate.

Kiersten and Lilia, both 5 years old, have alopecia areata, an autoimmune disorder that has caused their hair to fall out. Kiersten had long, curly blond hair that began to fall out in patches a few months ago. Lilia was just a year old when clumps of her long, dark locks began falling out.

Alopecia areata is hair loss caused when the immune system mistakenly attacks hair follicles, causing smooth, roundish patches of hair loss, according to the Mayo Clinic website. It’s most common in people younger than 20, though people of any age can be affected. The condition often leads to permanent hair loss.

Both girls have been fitted for special wigs by makeover specialist Ed Nez, who along with his wife, Kate, own the downtown wig studio. It’s been a process that has involved not only making sure the wigs are adapted to the girls’ active lifestyle, but also building their confidence, he said.

“These two little ladies are special, and when they hit the monkey bars that wig has to stay on,” he said.

Using a silicone interior in the wig allows it to better adhere to each girl’s head, and every hair in the wig is hand-tied to make it more durable.

“Their scenario is quite different than that of adults,” Nez said. “Glue is not practical for a 5-year-old.”

The process of fitting a child with a wig goes well beyond the physical mechanics of making it fit right. Nez has been working with the girls and their mothers to establish the self-confidence they’ll need as they go out into the world with their new hair.

“The work is not finding the wig,” he said. “The work is being able to talk about it, that you don’t need hair to be beautiful, but when you choose hair you have an option.

“I’m just a member of the team,” he added.

The makeover party was staged as part of the confidence-building process.

Kiersten’s mother, Nihcole Koelzer of Kalispell, said she was devastated when a local dermatologist diagnosed her daughter with alopecia areata.

“I googled stuff for weeks” to learn more about the disorder, she said. “In one month she pretty much lost all of her hair.”

Though hair can be a big part of a person’s identity, Nihcole said her family has worked to instill the sentiment that “it doesn’t matter how I look, it’s OK.”

Kiersten is a kindergartener at Elrod School, where her classmates have been especially kind.

“The kids have been really good,” Nihcole said, adding that getting used to alopecia at age 5 is easier now than if her daughter were older. “At this age, appearances don’t make a difference on who their friends are.”

Lilia’s mother, Joyce Sterkel of Eureka, said she also has worked hard to instill confidence in her daughter.

“Because she’s in a loving family, no one’s ever made fun of her or criticized her,” Joyce said. “She’s so self-confident and incredibly bright.”

Joyce, who has worked in the adoption field for 24 years, adopted Lilia at birth from a foster daughter who suffered from reactive attachment disorder and chose not to be involved in Lilia’s life.

When a dermatologist diagnosed Lilia, Joyce also sought information about the condition and learned that 5 million people in the United States suffer from alopecia and 115 million worldwide have the condition.

There can be a hereditary connection with alopecia. Nihcole learned that several members of her family have other autoimmune disorders, including cases of alopecia on her father’s side of the family.

Lilia has used conventional wigs for social events such as dance classes, but she has contact dermatitis and found them itchy and uncomfortable.

“A wig is more of a toy right now,” Joyce observed. “For her it doesn’t matter. She has an enormous hat collection.

“Every once in a while, though, she’ll say, ‘I wish I had hair,” Joyce continued. “Hair is a big thing for women. It’s so much a part of our femininity ... if she gets a good [wig] she can feel comfortable.”

Nihcole is working to establish a nonprofit organization to raise money to cover the costs of wigs for people with alopecia.

The wigs are expensive, Nez said, because of the handwork that goes into each one. Costs can range from $700 up to more than $2,400, and children will go through more wigs than adult, he said.

“Because of their age and their activities, what’s appropriate at age 5 won’t be appropriate at 12,” he said. “Age-appropriate wigs will be needed in different stages.”

The Koelzer family used the online fundraising tool GoFundMe to raise money for Kiersten’s wig.

When the wigs are ready, Kiersten once again will have her face framed in loose blond curls.

Lilia was fitted for her wig just prior to the Nov. 14 makeover party and hadn’t yet exactly what her shade of hair will be. “It’ll either be dark blond or light brunette,” her mother said.

Features editor Lynnette Hintze may be reached at 758-4421 or by email at lhintze@dailyinterlake.com.