Fargo sisters aren’t ill, their hair just doesn’t grow long

WEST FARGO - Well-meaning strangers approach 3-year-old Dela and 5-year-old Veda Voegele and ask the girls what kind of cancer they have.

Sometimes their mother Jorgia Voegele’s reaction is sadness. Sometimes she gets mad. And once, after a stranger persisted, she told Veda, “Some people are just rude.”

Jorgia (pronounced Georgia), an elementary school teacher, understands that her daughters attract attention. It’s not often you see two little girls with hair cropped close to their scalps.

So people assume they’re going through chemotherapy. Or they make polite comments about what unique haircuts the girls have. A pastor at a church the Voegeles visited asked if the congregation should pray for the girls.

What Jorgia and Travis Voegele want people to understand is that their daughters are perfectly healthy and happy. They just don’t have hair like other little girls.

It’s been a journey for this West Fargo family to put a name to the girls’ rare condition, short anagen syndrome. They now recognize it as a blessing, an opportunity to teach their girls about differences and acceptance.

Perplexing symptoms

Veda was born with wispy hair, like many babies. But as she grew, her hair didn’t seem to.

Jorgia mentioned her concerns at check-ups. Their pediatrician, Dr. Sarah Lien with Sanford Children’s, took a wait-and-see approach.

By the time Veda was 3½, not only had her hair not come in, but sister Dela was over a year old and had the same “buzz cut” look.

Physicians who saw the girls at the walk-in clinic for occasional ear infections mentioned alopecia, a condition where children lose their hair, often in patches. That didn’t seem to fit. The girls had full heads of hair. It was just really short.

And usually when there’s a hair issue, there are other tissue problems, Lien says, with the skin or fingernails.

Lien referred Veda to a dermatologist, who pulled out a sample of hair from the root. In his note back to Lien, he wrote that he was “perplexed.” A pathologist’s report of the hair sample analysis was not definitive, Lien says.

In the meantime, Travis and Jorgia just wanted assurance that Veda and Dela were OK.

“In the back of your brain, you’re thinking cancer, you’re thinking things that could be very serious,” says Travis, who works in commercial real estate.

One evening, late at night, Travis googled some of the buzz words he’d heard the dermatologist say. That led him to a Facebook group of families affected by short anagen syndrome. There, he saw photos of other children who looked like his girls.

In short anagen syndrome, the active hair growth, or anagen, phase is shorter in duration, causing abnormally short scalp hair. While individual strands of hair normally grow 4 to 7 years before falling out, the girls’ hair may grow for six months to a year, Jorgia explains.

Jorgia sent a message to Lien with Travis’s findings. In a journal article Lien found describing the condition, she underlined phrases that held true to the Voegele girls. She wrote notes in the margins like “This is it” and “Way to go!”

Patients often search online for information and can be misled, which is frustrating for physicians, Lien says. This was a case where social media provided an answer that doctors here didn’t have, she says.

“I can’t give them guidance on what’s going to happen, because I don’t know. I can’t say I had a patient like this and they grew hair,” Lien says. “Now they’ve got a forum of people they can talk with and see pictures of kids who are older.”

Learning acceptance

With an answer in hand, the Voegeles felt relief. They declined to see a pediatric dermatologist in the Twin Cities or go through genetic testing.

The syndrome has no cure, and medications to promote hair growth have potential side effects with no promise of results.

There are a few tricks they use. The girls sleep on silk pillowcases, which don’t pull on the hair. They use mane and tail shampoo, which makes their hair thicker.

In short anagen syndrome, hair growth often increases after puberty. The Voegeles don’t know if the girls’ hair will ever be long, but one day they can have cute pixie cuts or page boy styles.

For now, Veda and Dela sport sparkly stud earrings and have an impressive collection of headbands, which their parents say help avoid confusion about their gender.

Because their lack of hair is caused by a medical issue, Dela and Veda could get wigs through the Locks of Love organization. Jorgia and Travis say if either girl asked them for a wig, they would get one. Otherwise, they won’t.

“I think the wigs are wonderful for kids with cancer who have lost their hair and want to be like they were,” Jorgia says. “But for them, it would be like they’re trying to be someone else.”

Jorgia likens a wig to a Band-Aid. It just masks the problem. It doesn’t teach the girls how to deal with their lack of hair.

“It gives us an opportunity to teach our kids to know that other kids are different than them, so hopefully when they’re older, they’ll be more empathetic,” Travis says.

The girls are outgoing, friendly tykes. Dela is a goofball, her parents say. She loves to “boogie” and wants to be a ballerina. Veda is artistic, and wants to be a judge when she grows up. She brushes her hair in front of the mirror like any little girl.

Ask Veda why she doesn’t have hair, and she answers with a shrug and an assured answer: “ ’Cause that’s the way I am.”

Lien says she makes a point to not focus on the girls’ hair at their appointments.

“I don’t want them to think that they’re sick or that there’s something wrong,” she says. “The thing about Jorgia and Travis that I love is they’ve got it figured out what to worry about with their kids. These are beautiful, wonderfully developing, healthy children who happen to have short hair.”

As a teacher, Jorgia sees children face more challenging issues. It seems like every child deals with something, she says.

Jorgia’s even found a bright side of her girls having the syndrome.

“If this is their challenge, that’s OK,” Jorgia says. “To not have hair in life, we get to sleep in (because we don’t have to fix their hair). That’s what we’ve decided.”

What is short anagen syndrome?

A recently described and under-recognized disease, short anagen syndrome is characterized by the inability to grow long hair because of a short anagen phase, during which hair grows. Patients complain of abnormally short scalp hair. The condition is benign and most of the reported cases had no associated systemic diseases or skin disorders. Hair length tends to improve spontaneously after puberty.

Source: Pediatric Dermatology

Readers can reach Forum reporter Sherri Richards at (701) 241-5556

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Tags: shesays, family, health