The Reality of Living With Alopecia

living with alopecia

As a 12-year-old, Mikaya Warren was diagnosed with alopecia areata, an autoimmune disease that would eventually lead to the loss of her hair. “I was a girly girl,” Warren said, “I absolutely loved doing my hair. That was kind of my thing and so, when I lost my hair, I just felt really insignificant.” Now, at age 30, Warren has learned to appreciate and love her appearance, including her baldness.

Alopecia is a blanket term that can refer to several different types of hair loss. Alopecia areata, which Warren lives with, can affect people of all ages, sexes and ethnicities. There are, however, other types of hair loss that many dermatologists believe are more common among black women than individuals of other ethnicities.

A 2015 report by market research firm Mintel highlights the importance of style and beauty to black consumers, noting that 50 percent of black consumers say their hair is important to their identity. For black women living with alopecia, their relationship with their hair is certainly impacted.

Jazzi Johnson, a 27-year-old freelance writer and editor, was born with alopecia areata. Johnson is currently working on a project of her own creation called Black Girl Bald, a medium that will explore the emotional depth of alopecia. Speaking about alopecia, black women and the reason she wanted to create Black Girl Bald, Johnson said, “Our hair is so connected to our identity.”

A 2015 report by market research firm Mintel highlights the importance of style and beauty to black consumers, noting that 50 percent of black consumers say their hair is important to their identity.

As a part of the Black Girl Bald, project Johnson recently published a story with Oxygen Media about her experience with alopecia. “I had been debating whether to write the piece for a very long time,” she said, “My main fear is that I was going to be exposing myself.” She explained that her alopecia was “kind of like a secret to an extent and not purposefully. It just developed naturally.” Johnson wears wigs and has for several years now.

Because of this, many people are unaware that she is bald. She said, “My main goal in publishing the story was to confront this fear of exposing myself.” She continued, “I was really happy that I did it because I felt such a relief and reassured. This is a huge part of who I am, and I shouldn’t hide it or be afraid to talk about it.”

Mikaya Warren is a model and image consultant in Tallahassee, Florida. In 2012 she founded My BALD is Beautiful, Inc.. BALD in this case stands for Bold Alluring Laudable Distinctiveness.

Speaking about the importance of hair to women, Warren said, “Hair is just one of those things that we count on to help enhance our beauty.” She continued, “There is a saying in the alopecia community that hair is just an accessory, but to some that is offensive because it’s an accessory that I no longer have the option of using.”

Although alopecia areata can affect anyone, there is an increased prevalence of scarring forms of hair loss and hair shaft breakage among black women.

living with alopeciaWarren decided to start My BALD is Beautiful after an interaction she had with another person with alopecia. She had gone to a drugstore one day where she said that “a little girl and her mom came up to me and told me that her daughter had alopecia and asked if I had it too.” The family had never met anyone else with the disease, which inspired Warren to start the organization as a resource for people living with alopecia.

“I wanted to create a safe space that women and girls could rely on to provide them with emotional and moral support for walking through life with this disease because it is very visible,” she said.

According to the American Academy of Dermatology, alopecia areata leads to hair loss in round patches on the scalp and may escalate to a complete loss of hair on the head and the entire body.

Although alopecia areata can affect anyone, Dr. Amy McMichael, president of the Skin of Color Society, said, “there is an increased prevalence of scarring forms of hair loss and hair shaft breakage among black women.” McMichael highlighted central centrifugal cicatricial Alopecia (CCCA) and traction alopecia as common among black women.

CCCA is believed to be caused by the excessive use of strong chemicals and heat on the scalp and can lead to permanent hair loss. Chemical relaxers, hot oils and hot combs frequently used by black women are believed to play a role. A 2011 study lead by Dr. Angela Kyei of the Cleveland Clinic Institute of Dermatology found that, within a group of 326 black women, nearly one third had CCCA.

Traction alopecia is caused by repeated pulling of the hair and is common among, but not exclusive to, black women. Hair styles like braids, weaves, cornrows, locs and tightly pulled ponytails, can cause traction alopecia.

Traction alopecia is caused by repeated pulling of the hair and is common among, but not exclusive to, black women. Hair styles like braids, weaves, cornrows, locs and tightly pulled ponytails, all of which are common hairstyles among black women, can cause traction alopecia when not done and cared for properly.

Unlike CCCA and traction alopecia, alopecia areata is caused by internal processes. Individuals with alopecia areata have an autoimmune disease that causes the immune system to mistake healthy cells in the hair follicle as foreign invaders. This leads the body to attack those cells in the hair follicle, resulting in hair loss.

Treatments are available for some types of alopecia, depending on the stage or progression of the condition. McMichael said, “Treatments are directed at the cause of the problem.” Treatments can range from topical and injected steroids to hair transplantation, depending on the type of alopecia.

McMichael said not only is it important for people suffering hair loss to see a dermatologist, but that it is also important “for patients to come early when they begin to experience hair loss because some forms of inflammatory hair loss can cause permanent or progressive loss if not treated.”

Though there are limited treatments for alopecia areata, the disease is incurable.

Mikaya Warren has found a way to live with alopecia areata and be a confident black woman. Becoming comfortable with baldness did not come easily to Warren at first. “I had struggled with it for years,” she said. But things began to change through a series of encounters.

Speaking of her then boyfriend and now husband, she said, “At the time, I was wearing wigs and so he didn’t know that I was bald. I felt like I was doing him a disservice by not revealing my true self to him.” When Warren showed her boyfriend pictures of her modeling without a wig, she said that “he was like, ‘You’re beautiful without wigs’.”

Another encounter occurred when she was considering whether or not to wear a wig to an audition for America’s Next Top Model, a television show. Warren consulted a photographer who she had been working with. “He said, ‘Just send me a cellphone picture of you without a wig,’ and I’m driving in my car and sent him a picture. He called me back and was just completely in awe.” It was through encounters like these that Warren said she “began to think, if everybody else can see it, why is that?” She said “this led me to reevaluate how I saw myself.”

When asked if she still finds it difficult to suffer from alopecia, Warren said, “It kind of seems like the more I accepted myself, the more others did, too, and today I have no ill feelings about my appearance at all.”

Jazzi Johnson said that she has a fear of going completely bald. Johnson said that wigs are her “main go to, but I might begin to challenge myself on that”. She said, “It’s that memory of having people wonder what it is and what it isn’t. A lot of times people just assumed I had cancer.”

Recounting a story from her childhood, Johnson said, “I think it was like fifth grade and one girl said, ‘Oh how long until your hair starts growing back’?” This girl thought that Johnson had just finished chemotherapy. Johnson continued, “the girl was like, ‘We all thought you had cancer’.”

It is important for patients to come early when they begin to experience hair loss because some forms of inflammatory hair loss can cause permanent or progressive loss if not treated.

In the article she wrote, Johnson referred to alopecia as her own “personal magic”. When asked if she had any thoughts on how women can embrace their alopecia, she said, “One thing that helped me emotionally was when I just started to have fun with it.

For example, there was a time when I would buy wigs to make them be my hair.” She said that once she started to become more comfortable with herself, she thought, “I can wear whatever hair I want. I could wear red hair this day and then blue hair and then black hair.” Johnson said that she realized she did not have to restrict herself to wearing the same wig every day to appear like everyone else.

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