Alopecia is No Joking Matter

One Black Woman’s Testimony on her Battle with the Disease

By J. Coyden Palmer March 28, 2022

Over six million Americans have been diagnosed with some form of alopecia, an auto-immune disease that causes hair loss to which there is currently no cure. The disease often goes undiagnosed or is misdiagnosed by physicians. While the disease effects both men and women and people of all races, for Black women, such as Jada Pinkett, alopecia can have an even more sinister effect due to the history of Black women’s hair being weaponized against them in the some of the worst of ways. Black women who chose to wear their hair in its natural state have resulted in employers enforcing strict dress codes that focus on hair regulations. African American workers and students across the U.S. were/are subjected to discriminatory punishments due to their hair.

As a result, 12 states (California, Colorado, Connecticut, Delaware, Illinois, Maryland, Nebraska, New Jersey, New Mexico, New York, Virginia, Washington) have now passed laws making it illegal to discriminate against workers and students based on their natural hair.

While laws can help those in the workplace, living with alopecia every day is the tougher battle. Just ask Demona Ross-Seposs. Ross, 54, was recently diagnosed with alopecia areata, which has four different forms with the most common being a loss of hair that often starts in patches the size of a quarter but may get larger and grow together into a bald spot.

A former chef at the Westin Hotel, Ross-Seposs said in 2020 she nearly died. While on her way to work she started having symptoms similar to a heart attack. She went to the hospital and was immediately admitted. She was initially diagnosed with rhabdomyolysis, a disease that can be fatal when proteins and electrolytes are released into the blood due to torn or damaged muscle tissue. But when the symptoms did not subside after five months, she was re-evaluated after scheduling to see a rheumatologist. Because she lives in a small town, the wait to see the rheumatologist was six months. However, once she was eventually seen, she was shocked with her new diagnosis.

“The doctor did more in-depth tests and she knew more about how some diseases affect African Americans more,” Ross-Seposs said. “One of the reasons why my protein factor was high is because Black people have a different muscle mass density, that produces more protein and they have a different chart for us that many primary care doctors don’t factor in. I was experiencing weakness, tiredness, feeling faint and other symptoms, including the loss of my hair.”

Her form of alopecia can flare up really bad at times. Because of the unpredictability of the disease, Ross-Seposs now has a temporary handicap placard issued by her home state for her vehicle just to be safe. She said people will see her and think that she is abusing the placard. But they don’t see the times she may be struggling to walk to the car without losing her breath or feeling light-headed. Alopecia symptoms include more than just hair loss.

“This is not a disease that people take seriously. It’s embarrassing. Who wants to not have hair? Especially a woman,” Ross-Seposs asks.

Dr. Stavonnie Patterson is a board-certified dermatologist, who deals with hair loss in patients on a daily basis. During a recent appearance on the Black Scientist Cooperative, she spoke about different treatments for alopecia, but cautioned there are many different types and seeing a medical professional is the first step to getting the proper diagnosis.  

“Not all forms of hair loss are normal,” Dr. Patterson began. “Until you know what is causing it or what type of hair loss it is, you don’t want to just embrace it. If it is something you can prevent or treat, you want to be able to do that. A wig is not the only option.”

Patterson stressed you can’t just go to any doctor, which is what Ross-Seposs learned. You must seek out a doctor that specializes in hair loss so they can do a full evaluation to learn about your past medical problems, what you are experiencing right now and conduct a full exam of the scalp.

Patterson said there are two types of hair loss that she commonly sees in Black women; traction alopecia and Central Centrifugal Cicatricial Alopecia (CCCA). CCCA causes destruction of the hair follicles and scarring leading to permanent hair loss. This is believed to be caused by an overexposure to intense heat, tight hairstyles, or the application of chemical relaxers and dyes. Traction alopecia is typically associated with braiding of the hair too tight in hairstyles like cornrows, pony tails, buns or hair extensions.

Ross-Seposs said her entire life, her hair would always grow to a certain point and then fall out. She never knew why. She said family and friends would often suspect she had done something wrong, which added to the stress, not knowing that she was inflicted with a severe medical condition.

Before her latest battle with alopecia four months ago, Ross-Seposs said she had been growing her hair for three years and had even grown enough confidence to start wearing braids again. But then the soreness and prickling in her scalp started again, signs that alopecia was about to rear its ugly head. She immediately took out the braids and started putting different ointments on her head. It didn’t matter however, because the disease comes from inside the body, and before she knew it there were clumps of her hair falling out.

“Living with this disease is horrible,” said Ross-Seposs, becoming emotional. “It’s embarrassing. It makes you feel like less than a woman. I constantly keep my head covered. I wear a wig. I don’t want to shave my head for fear of experiencing jokes like Jada had to endure. I still won’t let my husband see my condition. I wear bonnets and shower caps around the house and sleep with my head in a wrap. In high school I had weaves before they became popular because I was trying to find a way to hide it. It's been a total thorn in my side my entire life.”

In addition to the physical toll on the body, alopecia also can affect a patient’s mental health. According to a 2005 study published by the National Library of Medicine, people with alopecia have higher levels of anxiety and depression. They also experience lower self-esteem, poorer quality of life, and poorer body image. The failure to find a cure can leave patients distressed.

“There is an important link between hair and identity, especially for women. About 40 percent of women with alopecia have had marital problems as a consequence, and about 63 percent claim to have had career related problems,” according to researchers Drs. Nigel Hunt and Sue McHale.

Ross-Seposs wants the Black community in particular to understand that the clichés are not working. She said people are attempting to be complimentary when they say, ‘you have the head for it,” or “you are not your hair,” or “your hair doesn’t make you.” She said our community is failing to understand the reality of how much of a stigma is put on woman’s hair in our society and within Black culture. In 2017, Black Americans spent a whopping $473 million on hair care products alone, according to Statista, a global business data platform.

“We as Black women put a lot into our hair. Blackmen, say it doesn’t make a difference, but how many Blackmen walk up to the women with the bald heads and say, ‘can I get that number? I can guarantee you that when I walk down the street wearing my blonde wig, I get way more attention from men than when I’m wearing it in its natural state right now,” said Ross-Seposs, who was just returning from a doctor’s appointment where a biopsy was done on her scalp. “This is not a disease that you can show, especially if you’re Black because of our own people. Chris Rock is a main example of it. Jada was trying to rock this bald style and walk in her truth and the first thing he had to do is call her G.I. Jane.”