Girl without hair learning to cope

0 Comments | Gazette, The (Colorado Springs), Apr 17, 2006 | by CARY LEIDER VOGRIN THE GAZETTE

A doll is being specially made for Maddie Werner -- one that will look a lot like the second-grader. It will have pale skin, a few freckles and will wear either jammies or a soccer uniform. And like Maddie, it won't have hair.

Maddie, 7, has lost her curly goldenbrown locks -- her "princess hair," as she called it. She's also lost her brows and lashes because of a condition called alopecia areata, an autoimmune disease that attacks hair follicles.

The condition isn't contagious, isn't lifethreatening and isn't painful. Maddie is otherwise healthy. Still, her mother, Lisa Werner, worries about her.

"I think that girls or women have a lot of identity tied up in hair," Lisa Werner said. "I worry about who wants to take the bald chick to prom, or what will she wear for First Communion."

More than 4 million Americans have alopecia areata, although most cases involve partial hair loss. Much about the condition remains a mystery. It's thought that a combination of genes may predispose some people to it, and a national study is under way to find answers. For some people, hair grows back unexpectedly.

Maddie lost some hair in kindergarten, but it grew back. Her hair started falling out again just after school started this year. By November, she no longer had brows or lashes and her hair was coming out by the handful, her mom said. By January, she had lost it all.

Lisa Werner wrote a letter that was distributed to parents at Maddie's school, Pinon Valley Elementary in Cheyenne Mountain School District 12, asking parents to encourage their children to be accepting and understanding of her daughter's condition. She also visited with Maddie's classmates and read them a letter that Maddie helped write:

"Can you please treat Maddie the same as you did when she didn't have hair falling out? When you point or whisper about her, it makes her feel sad," said part of the letter.

Maddie's parents bought her a $180 wig, but she hasn't worn it. Instead, she opts for a "hair hat" -- a cap with a hairpiece attached inside -- or a do-rag. She's only comfortable going without a hat at home or when she's with her best friend, Emily.

"I like to take it off near her," Maddie said after school this month, as she looked at her friend, Emily Petrovic.

"Because I don't stare," Emily said. "Because she's my best friend, we cheer each other up.

"Her dad said she's lucky to have me as a friend and that she needs me right now. I'm lucky to have a friend like her."

Greg Werner, Maddie's dad, said he's most concerned about his daughter's confidence. She hasn't yet agreed to go swimming, and she's bypassing the annual daughterdaddy dance they have attended in the past.

"The thing that from my perspective is the saddest and the hardest is that she has no eyebrows. She's in my opinion, a beautiful girl and always will be. Her face has lost so much of its warmth and its expressiveness because you don't realize how much eyebrows play into that."

Dr. David Norris, an alopecia areata expert at the University of Colorado Health Sciences Center and a principal investigator in a national alopecia study, said although there is no cure, temporary use of steroids and other topical treatments are sometimes effective in promoting hair growth.

"The emotional treatment of the patient is in many ways the most important part of the management," he said. "We really rely heavily on the support groups and the NAAF," he said, referring to the National Alopecia Areata Foundation.

Pro basketball player Charlie Villanueva has emerged as a role model for kids like Maddie. Villanueva, a 21-year-old forward for the Toronto Raptors, is the new spokesman for the NAAF, and at games, he meets with children who share his condition.

Lisa Werner is hoping Maddie will meet others with the disease and intends to start a support group in Colorado Springs.

Werner got the idea for a custom-made doll in an NAAF chat room, where another parent said such a doll was a great help to her daughter. After contacting two national manufacturers and getting turned down, Werner found Nicola Allison, a dollmaker in Colorado Springs, who met with Maddie to discuss how the doll would look.

Lisa Werner said her daughter is coping well -- better than her mom, even.

"I have to keep remembering it's only hair," Lisa said.

CONTACT THE WRITER: 636-0236 or cary.leider-vogrin@gazette.com

SUPPORT GROUP

To take part in an alopecia areata support group, e-mail Lisa Werner at: kirkwerner4@msn.com