Twelve-year-old Birmingham girl copes with hair loss disease ...

BIRMINGHAM, Alabama - An honor roll student, 12-year-old Tomya Allen wants to be a forensic investigator when she grows up, just like her favorite TV character, Abby, on the popular show NCIS.

Dealing with dead bodies and blood-splattered crime scenes sounds scary perhaps. But Tomya has other worries right now. Her biggest fear:?

"That my wig will fall off at school and everybody will start laughing."

Tomya has lost most of the hair on her scalp because of a condition called alopecia areata, an autoimmune disease affecting 6.5 million people nationwide; the majority are young people.

Tomya was officially diagnosed just a few weeks ago, but she first started losing small clumps of hair around Christmas time.

ALOPECIA AREATA

Most common autoimmune disease that may result in total or partial loss of scalp and body hair.

Affects more than 6.5 million Americans and 145 million people worldwide.

No current cure and no treatment that is approved by the Food and Drug Administration.

?Occurs in both sexes and all races and ages, but young people are affected most often.

Starts usually with one or more small, round patches on the scalp.

In some people, the disease can affect hair on the scalp until all of it is lost (alopecia totalis), or over the entire body, including the eyebrows and eyelashes (alopecia universalis).

SOURCE: National Alopecia Areata Foundation

"We didn't know what it was," said her mother, Cherry Allen of Birmingham. "At first we thought it was being caused by her perm."

Smaller clumps became bigger clumps. Mom privately worried her daughter may have cancer.

"We were very scared," she said.

Mom and daughter went to the doctor, who referred Tomya to a dermatologist. After some tests, it was confirmed: alopecia areata. The autoimmune disease has no cure and no Food and Drug Administration treatment, according to the National Alopecia Areata Foundation.

It's not contagious, physically debilitating or life-threatening.

But for a 12-year-old girl, it is life-changing.

"I thought 'My Gosh' what am I going to do," Tomya remembered. "I'm going to have to hide it at school."

She recalled several incidents with students at Hudson K-8, where she just finished 6th grade making all A's and B's.

"Why are you wearing a lacefront (type wig)," she recalled one student saying. "Are you bald-headed?"

"That's my business not yours," she recalled snapping back.

Tomya confided in her best friend, who supported her like a best friend. But it has still been a scary and lonely road with lots of tears and prayers, said her mother.

Tomya agreed to be photographed and talk about her experience in hopes of dispelling misinformation about the disease. She also hopes to find other people her age with alopecia to talk to and support.

Although alopecia support groups exist throughout the country, there are none in Alabama, according to the National Alopecia Areata Foundation.

Cherry Allen said her daughter was at first embarrassed to take her wig off inside the house. But has been slowly becoming more comfortable with herself, she said.

"I told her, 'You know I love you just the way you are.' " Cherry Allen said.

For this story, Tomya agreed to do something she hadn't done before: Take off her wig outside.

Holding several of her wigs, Tomya smiled broadly for AL.com photographer Joe Songer.

"The wigs get hot and uncomfortable," her mom said.

Tomya was asked how it felt removing the wig.

Her answer was short, but there was more than relief from the heat behind the reply. There was the freedom from hiding a secret. There was the knowledge she's loved just the way she is.

She pushed her smile to its limits.

"I feel good," she said.

Source: http://blog.al.com/spotnews/2013/06/twelve-year-old_birmingham_gir.html

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