Headlines
As reported by the Waterbury Republican-American, May 18, 2004.
Disease's Emotional Scars
Young Kristen Zesner of Waterbury has lost her hair to Alopecia Areata, a painless but trying condition
By Tracey O'Shaughnessy
In the fifth grade, when most young girls are developing breasts and bracing for puberty, Kristen Zesner began losing her hair.
It came out in little quarter-size discs on the back of her scalp, an embarrassment she could hide by pulling a curtain of her long blonde hair over it. But within five months, all of the downy tresses she and her mother had so long admired were gone.
She was 12 years old and bald.
"We were under the misunderstanding that there were so many treatments we could do," said Rosemary Zesner, her mother. In fact, there were none. Alopecia Areata, the disease that robbed Kristen of her golden locks, has no known cause and no known cure. The autoimmune skin disease that leaves its victims bald — in some cases, with no hair on any part of their body — affects nearly 2 percent of the population. It does not discriminate on the basis of age, gender or race.
It also does not hurt its victims.
That is, if its victims have no feelings.
Since the onset of her disease, the Waterbury girl has lived with the taunts and insults of her schoolmates and even those she once considered friends. She has had her wig ripped off. She has been jeered at. Always a shy girl, she has become depressed and reclusive since she has lost her hair and is on medication to treat her depression. Her mother, who is unemployed and also suffers from depression, says she no longer wishes for her daughter's hair back. Now, she just wants her daughter back.
"I've watched her turn into a totally different child," says her mother. "She's always been shy, but she was always happy. We've watched her sit back and forth crying and crying, and there's no way to comfort her."
As Rosemary Zesner speaks, her daughter, a bespeckled girl with bright blue eyes, huddles in the corner of her family's couch under a blanket. She hardly says a word. When she does speak, she speaks monosyllabically. Asked if she has been ridiculed, she nods and buries her head in her blanket.
‘Emotionally Devastating'
In Alopecia Areata, a person's hair follicles are mistakenly attacked by the immune system, which stops the hair from growing. The disease usually starts with one or more small, round, smooth bald patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis). It can occur at any age but often begins in childhood.
Although the disease may have a genetic component, researchers do not know what triggers the immune system to combat a body's hair. It's hereditary in the sense that its victims may have family members with other autoimmune diseases.
"It's emotionally devastating," says Diane M. Hoss, associate professor of dermatology and director of the hair loss and scalp disorders clinic at the University of Connecticut Health Center in Farmington. "A lot of a person's self-image is centered around their hair. It's definitely a part of the way people view themselves. You can just tell by how much by how many billions we spend on hair care."
The National Alopecia Areata Foundation reports that in one out of five persons with Alopecia Areata, someone else in the family also has it. It is more likely to strike younger if someone in the family was stricken before the age of 30. Zesner says no one else in Kristen's family has the disease.
"The thing about this disease that's so difficult is that some people get it when they're younger and don't even notice it," said Lisa Gallagher, director of public relations for the National Alopecia Areata Foundation. "It comes, you lose your hair, your hair grows back again."
The disease is cyclical. It can come in patches, result in patchy hair loss and then disappear, leaving its victims with their hair restored. The hair can be maintained for months or even years and then, just as suddenly and inexorably, recur. That's because, regardless of the level of hair loss, the hair follicles remain alive and are ready to resume normal hair production whenever they receive the right signal, according to the foundation. That's in contrast to male-pattern baldness, in which the hair follicles that are lost are dead. Even without treatment, those with Alopecia Areata may experience hair regrowth after many years.
"You never know if you're going to lose your hair again," says Gallagher. "You just live with that fear."
As a result, many victims of Alopecia Areata suffer from depression, low self-esteem and other psychological diseases.
A Child's Suffering
For months after her hair fell out, Kristen could not let either of her parents out of her sight. She suffered panic attacks. She cried so uncontrollably that she began to smack her head against the wall of the family's small apartment repeatedly, after which her mother rushed her to St. Mary's Hospital's emergency room.
"The whole emotional thing is the most traumatic," says Gallagher. "If you're a 10-year-old girl and you lose your hair, it can affect the rest of your life."
In milder cases of the disease, monthly cortisone injections in affected areas can bring some relief, said Gallagher. The steroid essentially simulates the follicle to produce hair again. Some patients have tried oral cortisone but because of the long-term health effects, most doctors do not recommend this treatment.
Zesner's dermatologist, Hoss, recommended against treatment. "She told us most of the treatments don't work," said Rosemary. "She said if it were her daughter she wouldn't do it."
"When someone loses all their hair to it, the condition tends to be fairly unresponsive to therapy," Hoss said. "There's something about the condition when it's widespread that makes it poorly responsive to therapy." If all or most of the victim's hair is gone, treatment is effective less than 20 percent of the time.
Instead, Kristen wears a wig of synthetic hair. She would like a suction wig made of real hair, but the cost can be thousands of dollars and insurance will not pay for the prosthetic. Kristen's father, who has emphysema, does not work. The family survives on his Social Security disability income. They are looking into a donation from Locks of Love, which provides real hair wigs to children who have lost their hair. In the meantime, the family is trying to work on Kristen's self-esteem.
"She cries a lot," says her brother, George, 16. "I can understand it. They pick on her."
A School Lesson
Rosemary Zesner has spoken with West Side Middle School authorities, who have been sympathetic to her plight and have encouraged Kristen to point out those who are tormenting her. Barbara Giancarlo, principal of the sixth grade at West Side Middle School, said she did not know of Kristen's condition until she read a letter to the editor about it written by her mother April 8.
"If Kristen doesn't bring to our attention who the individuals are, there's no way for us to stem the tide," said Giancarlo, who said she would never "knowingly ignore" a child with a medical condition. "Kids can be very vicious and hurtful."
Giancarlo said she believed much of the teasing takes place on the school bus. "It's just unfortunate that we didn't get a heads-up to educationally support her," Giancarlo said. "If anybody's being insulted or made to feel bad, my door is always open. Kristen has never come and addressed me."
"The trouble is, if they step in, it's going to make things worse for her," her mother says. Still, she says, she's frightened for her daughter's emotional health. "She's gone so far in herself that sometimes I can't help pull her out."
Rosemary Zesner said the family has decided to move to Florida to give her daughter a "new start."
"To me, she is the most beautiful little girl in the world," says Rosemary. "More than her hair back, I want her to be happy."