Publication Date: Wednesday Sep 10, 1997

Living without hair

When Palo Altan Molly Roddy was 2 1/2 years old, her mother, Maureen, noticed a tiny bald spot behind her ear. "She had just started wearing ponytails, and we thought the rubber band from the ponytail might have pulled it out," she said. Molly's pediatrician and a dermatologist determined that the hair loss was something else: alopecia areata. Right now, there is no cure for alopecia, a disease that affects roughly 2.5 million Americans, and researchers are still unsure of its cause. It is believed to be an autoimmune disorder, in which the body's immune cells attack healthy tissues they have mistaken for foreign invaders. Molly's family says she is "lucky" that her body's immune cells attack only her hair follicles.

Alopecia has one symptom: hair loss, which is often patchy and sporadic but sometimes--like in Molly's case--chronic. Other autoimmune diseases are much more severe.

However, that didn't make it any easier for Maureen to adjust to Molly's progressive hair loss. Alopecia sufferers typically lose their hair in small clumps. As Molly lost section after section of hair, Maureen kept a diary of what she was thinking.

"After one section fell out, I'd think, 'Maybe she'll just lose this one section,'" Maureen said. "After the next section fell out, I'd think, 'Maybe she'll just lose two.' It was pretty upsetting."

Molly, now almost 5 years old, is bald with a few wisps of dark, thin hair on the back of her head.

Some alopecia sufferers, like Fred Wahl of the Alopecia Areata Foundation in San Rafael, go bald but then grow back hair unexpectedly. Wahl lost all his hair in six months at age 27 but regained it two years later. The disease is "very unpredictable," he said.

But because Molly developed alopecia at such a young age, it is unlikely that her hair will grow back, her parents said. The best hope for her is a cure. There are medical treatments available for alopecia, including cortisone injections and creams, but for chronic hair loss most treatments are unlikely to succeed, Wahl said.

Molly's parents let her determine whether or not she tries treatments and whether she wears a wig or hat. Though she has a few wigs and a collection of hats, which range from comfy cotton ones to a more outrageous vintage number with feathers, Molly usually does away with them after a few minutes because they are a nuisance on the playground.

Also, because wigs are scratchy and expensive--insurance companies won't yet consider them prostheses for alopecia sufferers--Maureen has taken to buying cheaper hair pieces and sewing them on to the backs of cotton hats. Molly once wore a hat with a long strawberry-colored ponytail to a fair. When a woman in line behind her commented on her pretty locks, Molly took off the hat and cheerily bared her bald head.

Molly can also be shy, but she's usually not embarrassed by having alopecia. "I like it like this," Molly said, when asked how she feels about being bald.

"If she has a hat on when she goes out in public it comes off as soon as she gets outside, just like any other child," said Wahl, who knows Molly from foundation gatherings.

However, they do have what Maureen calls "bad days." Other children aren't always sensitive of Molly's condition. An 11-year-old boy approached Maureen in a park where Molly was playing to ask, "What's wrong with her? Why is she bald? Is she a boy?"

Though she admits she was mad, Maureen did her best to explain alopecia to him, while Molly chimed in with a now-characteristic lion's roar--her method of defense when people are unkind about her alopecia--and another mother began telling the boy how rude he was to ask those questions. "I felt like they were expressing what I wanted to, and I got to educate him," Maureen said.

Many alopecia sufferers fear leaving the house because of such reactions.

"We don't let it stop us," Maureen said. But Molly does have times when she doesn't want to go out to playgrounds or parks because she fears stares from others.

The first days in preschool, singing class and dance class were hard--Molly only wears dresses now because she doesn't want to be called a boy--but "people see you for who you are once they get to know you," Maureen said.

And Molly is charming. Sometimes when asked, "Why don't you have any hair?" she retorts, "I have a lot of hair. I just left it at home," and proceeds to tell other children about her wig collection.

She's also tough. "She used to be more shy and retiring about these things," Maureen said, "I think (having alopecia) has made her more aggressive."

In fact, Maureen said, their doctor told them alopecia sufferers who develop the disease as children often don't face self-esteem issues as teenagers because they've already come to terms with their appearance.

Still, Maureen worries about Molly starting school in a year. They have a video about the condition to show Molly's future kindergarten class. It was given to them free of charge by the foundation, which also funds researc grants and has support groups for alopecia sufferers nationwide.

But Maureen can't help but recall a time when a new batch of kids came to the preschool and a girl told Molly she was ugly because she had no hair. Molly cried.

"When you're four and a half, it's hard not to react emotionally," Maureen said. "Well, it's hard when you're 40 not to react emotionally."

Then, there are the "good days." In the grocery store, Molly has been approached by shoppers who tell her how beautiful she is. "And that's when, of course, I almost cry," Maureen said. "I don't think there's anyone who's really mean," she adds. "It's just kids are ignorant, and they don't say things with tact."

Dealing with Molly's alopecia has been a learning experience for the entire family, but hair or no hair it's not going to hold her back. "We have a lot of adventures," Maureen said.



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