Bonnie Lowry sits at a table in Sierra Vista hospital discussing the pros and cons of her prosthetic. She is young and tall with very long and thick red hair. While she talks, she pulls at the sides of her scalp and slowly removes her hairpiece.
She is completely bald.
People have come to hear Lowry talk about her experience with Alopecia Areata. Some have the disease, and some are family members of someone with the disease, but it is hard to tell between them.
Off to the side, there are two smiling and laughing girls, ages 5 and 9, playing tic-tac-toe. The 5-year-old is wearing a hat but it is obvious she has no hair. But that doesn’t seem to bother her.
The two girls’ mothers met for the first time today. They have seen each other around town, but neither knew their daughters shared the disease.
There are 16 people in the room, mostly women, but two of the men are bald. One has the disorder, the other merely shaves his head – you have to look close to tell. The disease doesn’t discriminate; the room is extremely diverse, with both young and old, white, black and Hispanic.
As the group ends, everyone slowly filters out the door after saying their goodbyes. Lowry has smiles as they leave, telling everyone to come back on Dec. 4. Each one says they will.
“Those are 10 people’s lives that are touched because they know they are not alone,” Lowry says.
According to the National Alopecia Areata Foundation (NAAF), one in every 53 Americans suffer from alopecia areata, pronounced al-oh-PEE-shah air-ee-AH-tah, which is an autoimmune disorder where the immune system attacks hair follicles, balding a person. Lowry, a Cal Poly senior, has had the disease since she was 9 and recently started a support group in San Luis Obispo for people with the disease. Although it is not deadly it can take an extreme psychological toll.
Lowry grew up in the Southern California town of Simi Valley. She was a tomboy with long blonde hair growing up, always outdoors and playing sports. Then her hair began to fall out, and within three months she was completely bald.
With a hairpiece she could no longer enjoy most of the activities she loved.
There are two types of Alopecia Aerata. Lowry has toatalis in which 50 percent of her body hair is gone. Universalis is when someone has lost 90 percent of his or her total body hair.
“I didn’t want help, I was in denial,” Lowry said. ” I didn’t want to talk to people because they were mean to me.”
“My friends and I thought that Bonnie had lost her hair from chemotherapy treatments,” said Tim Schamp, a social science major at Cal Poly who went to high school with Bonnie. “We didn’t know.”
Lowry said her Alopecia is commonly believed to be the result of cancer or other types of diseases.
Growing up was hard for her because people didn’t understand the disease and made fun of her. Now she can speak about it to the people she cares about and the people who need to hear it for help.
That doesn’t mean she tells everyone she is bald.
“I’m not going to go around Starbucks telling people I don’t have hair,” Lowry said.
There to help
At the support group, Lowry had slides of conferences she had attended. Every year the NAAF puts on a large conference for people with Alopecia Areata, people come to learn about the disease and how to help others with it. On the slides there are pictures of dozens of bald children- and they are all smiling. The disease mainly strikes during childhood.
“We’re all bald and having the time of our lives,” Lowry said of her time at the conference.
Many with Alopecia Areata, like Lowry, wear hair prosthetics, which can cost thousands of dollars and are custom-made.
Vicky Morris has a shop in San Luis Obispo, where she creates hair prosthetics for people with diseases, such as cancer and Alopecia Areata.
Morris’ mother had Alopecia and she created wigs to cover the bald spot. Now people come to her.
“Most people want the creation to look like their old hair,” Morris said.
Vicky describes the infinite amount of possibilities in creating the prosthetic. There is synthetic hair, human hair of different quality and hair from the belly of a yak. Hair from the belly of a yak is made to create a realistic white look.
Once the type of hair and style has been selected the prosthetic is created overseas where each piece is handmade with one hair being woven at a time. For most people, getting a hairpiece has an overwhelmingly positive effect Morris said.
“Most people leave with a tear in their eye,” Morris said.
It is the emotional impact of losing your hair that is the most damaging to those with Alopecia Areata.
To be so lucky?
Lowry tells the story of a woman she met online, who, three months after she was married, lost all of her hair. She became extremely depressed and contemplated suicide. But she kept on.
She now has all of her hair back.
The triggers for alopecia areata are still unknown and there is no cure, but there are treatments that can restart hair growth in certain patients.
“Alopecia areata is an unpredictable and capricious medical condition that is not easy to pronounce and is anything but easy to live with,” Wendy Thompson and Dr. Jerry Shapiro said in their book, “Alopecia Areata: Understanding and Coping with Hair Loss.”
But for Lowry, having Alopecia is merely a part of her life. She has found certain benefits to the disorder.
“My roommate thinks I’m lucky because I just put my hair on in the morning,” Lowry said. “It takes her an hour to get ready.”