Living with Alopecia
Posted July 26, 2012
Latina Sethman-Benthall has no hair. By age 12, after several years of patchy hair loss, her diagnosis of alopecia universalis, an autoimmune disease that affects 5 million Americans -- men, women and children -- left her completely bald.
For some it comes and goes, for some the hair loss is modest and localized. For those like Sethman-Benthall, it is total -- she has no eyebrows or eyelashes, nor any body hair.
She has had her struggles with self-esteem and depression and she still feels self-conscious. However, now 40, married, and with her youngest child a college sophomore, she has decided the time has come to reach out and help others. She also wants to raise public awareness of the condition, for which there is currently no cure or effective treatment.
Growing up, the alopecia made her feel like an outcast, somehow not socially acceptable. She had a hard time making friends. It made her the target of bullies at school in Hampton, who chased her and took her wig and stomped on it. Her peers thought she just liked to wear wigs. They called her "wiggy, wiggy," she says, her eyes tearing at the recollection. "I was humiliated." She remembers with deep gratitude fellow student Dina Marrow-Franklin who reached out to Latina in her junior year and showed her that "hair doesn't make you."
Her family, who adopted her from a Baltimore foster home when she was 2, has been endlessly supportive, but she still feels a lack of support from society at large. When people look at her, she worries if her wig is slipping, or if her eyebrows that she paints on have sweated off. She wears fake eyelashes in order to conform to societal norms.
She admires those who opt to be "bald and beautiful." "I still can't walk around without my wigs. I'm not there yet," says Sethman-Benthall. "This is going to be my breakthrough." In fact, even at home she keeps her head covered; at night, she has started setting her wig on a mannequin but she still wears a scarf.
In all, she has about 20 wigs. "I have a lot of faces," she says, noting that she prefers long hair, as hers was naturally, but that in the hot weather she wears short, skull-fitting styles. She indicates her short-cropped two-tone wig, and fluffs it briefly. "They last a few weeks, maybe a month. You can't part these," she says. "You lie on it and it gets matted." She has invested in a few Lacefront units, which are made of real hair and last several months, but are expensive, costing up to $1,000. "Now you can glue them to your head and you can swim with them," she says.
Over the years, she has struggled with being different but has found solace in her church, Next Generation Worship Center, which she joined in November. "I'm really strong with the Lord right now. He's teaching me that I'm different for a reason and I have to help others," she says.
In the past she has been treated for depression, but now she finds herself optimistic. She joined an online support group through Alopecia World. "It really helped seeing all those stories," she says. "They didn't have that when I was growing up." She also made a friend in Maryland through the site, Nicole Wright, with whom she communicates daily.
Now, Sethman-Benthall, who works for the city of Hampton, is reaching out to others with alopecia to help them navigate the difficulties associated with a little-known, but relatively common disease.
Alopecia areata is a common autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. It usually starts with one or more small, round, smooth patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis).
The National Alopecia Areata Foundation is holding its 27th annual conference in Washington D.C. from July 19 to July 22; the goal of the conference is to make Congress aware of the disease and the need for research dollars for the autoimmune disease.
Saturday, Aug. 4, is International Alopecia Day. http://www.naaf.org.
Latina Sethman-Benthall will hold her first support group meeting for those with alopecia from noon to 3 p.m. Saturday, Sept. 22, at 317 Rip Rap Road, Hampton. Please respond to Latina by Sept. 8 at 757-254-9729, or email firstname.lastname@example.org. She belongs to an online support group at http://www.alopeciaworld.com.
©2012 the Daily Press (Newport News, Va.)
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