Tuesday, April 12, 2016

HAIR LOSS HEARTBREAK: Women and men struggle with emotional toll of alopecia areata

Kyleen Joan Oswskey was 14 and living in Foxboro when she first noticed bald spots behind her ears.
Now 21 and living in Pine City, Minn., “I don’t have much hair left,” Oswskey said.

She has been dating for about a year, she said, but her boyfriend has yet to see her without her wig.
“I don’t even like to look at myself with no hair,” Oswskey said. “It’s really heartbreaking to a girl not to have hair.”

Oswskey has alopecia areata, an autoimmune disease in which the individual’s white blood cells attack his or her hair follicles.

“Your autoimmune system is designed to flush out anything harmful to your body,” said Gary Sherwood, spokesman for the California-based National Alopecia Areata Foundation. “Sometimes, it works too well.”

It’s often referred to simply as alopecia, Sherwood said. Technically, though, alopecia means any hair loss. It can include male pattern baldness.

Though more specific, alopecia areata affects more people than you might think: about 2.1 percent of the population, Sherwood said. About 6.6 million Americans have, have had or will have the disease, he said.

Among them is Cheryl Johnson, 55, a barber’s daughter who lives in western Duluth.
Johnson first developed what she calls pinpoint bald spots when she was a child. They weren’t really noticeable, she said.

That changed when she was in her early 30s.

“In 1993, I think it was, all my hair came out,” she said. “It was probably over the course of seven months. I would sit on the couch and run my fingers through my hair, and by the end of the night I’d have a pile of hair next to me.”

It doesn’t affect only females. Tyrone Folliard-Olson, a lawyer who lives in Northeast Minneapolis, said his barber first noticed he had a quarter-sized bald spot when he was 13.

It was bigger the next time.

“We decided to go to the doctor and have it checked out,” Folliard-Olson related.
The doctor suspected alopecia areata, and a dermatologist confirmed it.

As an adolescent, Folliard-Olson could compensate for the condition. He jokes that he has had a comb-over since he was 13. But that came to an end when he was in his early 20s.

“My first year of law school, in my early 20s, my hair started falling out a lot more,” said Folliard-Olson, who volunteers as a legislative liaison for the National Alopecia Areata Foundation. “I got so many bald spots I wasn’t able to cover them with the hair I had. I had my head shaved for the first time ever. It was about the most freeing thing that I’ve gone through in my entire life.”

It seems to affect males and females about equally, Sherwood said, and can show up at virtually any age — even in toddlers. The youngest children tend not to be bothered by it, he said, and their friends get used to it, too.

“Where it really starts to become a problem is, let’s say you’re in junior high or high school … (and) on top of all the pressure, now your hair falls out,” he said.

At that age, Sherwood said, it can be as hard for boys to deal with as girls.

Dr. Lynne Goldberg, a dermatologist who is a professor at the Boston University School of Medicine, often sees patients with the disease.

“Some of these visits, when it’s first happening, are some of the most difficult patient visits,” said Goldberg, who also directs the Hair Clinic at Boston Medical Center. “It’s distressing for the patients. They look in a mirror, and they don’t recognize themselves. It often requires counseling.”

Although having alopecia areata doesn’t threaten one’s physical health, it can be harmful in other ways, Folliard-Olson said.

“Yes, it is a physical condition, but that’s not the difficult part,” he said. “It really is the psychological and the emotional toll it takes on people.”

Oswskey said it was distressing in her teenage years. Other girls at Superior High School picked on her, she said.

She was threatened via text messaging, phone calls and Facebook, Oswskey said, and she thinks the stress accelerated her hair loss. Her mother pulled her out of school during her sophomore year, she said.

Goldberg said she thinks stress can be a trigger for hair loss. “There are definitely precipitating events: emotional events, physical events, hospitalizations, too,” she said.

The cause is unknown, but there appears to be a genetic component, Goldberg said.
Esther Peterson, 80, of Cloquet said she believes her sudden hair loss resulted from a new medication she started using about five months ago.

“I was kind of losing my hair a little bit over the years,” Peterson said.

But less than a month after she started taking the medication, she said, her hair loss was noticeable to her hairdresser.

“It went on and on and on,” Peterson said. “Now there are just a few strands on top and some fuzzy stuff on the side.”

There are no FDA-approved drugs for alopecia areata, Goldberg said, but there are treatments. What’s used depends largely on the extent of the hair loss and the age of the patient, she said. Steroids often are the treatment of choice — typically topical agents applied to the scalp for children and injections for adults.

“All of us who have had alopecia for any number of years have tried multiple different treatments,” Folliard-Olson said.

He adapted to the shaved-head look, Folliard-Olson said, but didn’t like it when his eyebrows and eyelashes started falling out. To fight that, he submits to monthly steroid injections in his eyebrows by a dermatologist, to some effect.

“I would say I have patchy eyebrows at best,” he said.

Oswskey said she tried a steroid cream when she was younger, but it didn’t work for her.

For many female patients, coping with alopecia areata includes shopping for a wig.
That can be a time-consuming process, Goldberg said, so it’s a good idea to start early.
“I’ll try to counsel them on looking for wigs before they can’t leave the house,” she said.
The National Alopecia Areata Foundation has a fund with which to help people who can’t afford wigs, Sherwood said. But not everyone wants to choose that route.

“A lot of people will go with wigs,” he said. “Some people will go with scarves. Some, hats. Some will go au naturel.”

Peterson said she already had a wig, but will wear a cap at home. Johnson has a wig but often chooses to wear a scarf, she said.

Oswskey, who works as a personal care assistant and is studying to be a veterinary technician,  said it’s hard for her to go out in public with her wig on. So she plans to get a nonsurgical hair replacement from Hair Club. But it costs $2,000 to join plus a $300 monthly fee, she said, and isn’t covered by insurance, so she’s saving her money.

That works for some people, Goldberg said.

“I’ve had patients who are happy with the Hair Club,” she said. “I’ve had patients who are very dissatisfied. … It can be helpful and a good service, but it’s very expensive.”

Although as a legislative liaison Folliard-Olson advocates for spending research dollars on alopecia areata, he said he actually has become grateful that he has the disease.

“Alopecia areata has taught me at a young age to have a great sense of empathy for people who are going through difficult times in their lives,” he said.
Johnson also appears to be reconciled to the condition.

She recalled that she lived in Germany when her hair first was falling out, and she remembered another woman at church offering to pray for her.

She explained to the other woman that she had alopecia, not cancer, but she would appreciate prayer anyway.

Several years later, Johnson said, she was living in Washington state when a neighbor approached her about a friend who had alopecia, asking if Johnson would talk to her friend.

They met at a church, and Johnson saw that it was the woman who had offered to pray for her in Germany.

“Her husband, her son were all like: Mom, it’s fine; your hair isn’t who you are. We love you,” Johnson recalled. “I told her: God’s not going to give you anything you can’t handle. The hard part is when you’re not willing to embrace it. Just embrace it and trust God.”

Oswskey said it’s a hard thing to live with because people are so judgmental. But she works to cope with it.

“I just try to live my life and think positive,” she said. “If someone has it (alopecia), they shouldn’t be ashamed because a lot of people do have it (and other people) wouldn’t know it.”

SIDEBAR: Female hair loss not uncommon
Female hair loss is a “fairly common complaint,” a Duluth physician said.
“Half of women claim some hair loss, usually after 50 to 60,” said Dr. Addie Licari, a family doctor at St. Luke’s P.S. Rudie Medical Clinic. “It’s not as visible as male pattern hair loss. It’s more the thinning of the hair.”

When hair loss occurs in younger women, it’s more likely to have specific causes, Licari said. Those can include physical or mental stress, having surgery or vitamin deficiencies.

Sometimes, women can be their own worst enemies.

“Washing hair multiple times through the day, styling, pulling on hair for a different hairstyle,” Licari explained. “We see a lot of patients who have concurrent anxiety disorders.”

A specific condition, she said, is trichotillomania, a neurotic pulling out of one’s hair. Certain areas are more commonly targeted, Licari said, such as the back of the neck and the eyebrows.

In many cases, the best prescription for hair loss in younger women is patience, Licari said.
It takes two to eight months after a hair follicle falls out to grow back to full strength, she said.
“If there’s no external cause, it’s really just time,” she said. “Making sure you’re eating and drinking well. Getting plenty of sleep. Reducing stress.”

She also suggests washing one’s hair every other day or even every third day instead of every day, and using fewer styling products.

That can be a hard sell, but it allows your hair to rest and develop its own more natural lubrication, Licari said.

And the numbers, she said, are on her side.

 “We lose about 50 to 100 hairs a day,” Licari said. “If you wash your hair, 250.”

Licari said we have approximately 90,000 to 150,000 hairs on our head.

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