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Commentary: Living with Alopecia

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Paparazzi photos of supermodel Naomi Campbell revealed severe hair loss from Traction Alopecia. There were lots of murmurs online about a woman who is prized for her looks being "imperfect." But for many Black women, seeing Campbell's scalp was sadly familiar... It's believed that Campbell's hair loss came from years of damaging hair weaves that eventually broke away the root of her hair along the sides -- one of the most common forms of hair loss for Black women. It's a scary reality for a woman to witness her hair thin, break off or fall out. In many cases, a change in treatment gave the hair a second chance at becoming healthy or growing back. But for too many Black women this hair loss becomes permanent. In most cases it comes from years of hair "abuse" -- from bad weaves, too-tight braids, too heavy or tight locs and the misuse of perms, dyes and chemical treatments -- or from the actual autoimmune skin condition of Alopecia Areata, which affects more than 4.7 million in the United States alone.   New York-based interior designer Sheila Bridges suffers from Alopecia Areata. At the time she was diagnosed with the disease, she was busy with her career, filming episodes for her design show. Bridges, who choose to shave her head after turning 40, when the hair loss was at its worst, was very frank about living with the disease, admitting that while it is not life-threatening, it is "life-altering." "I was in the middle of production for my television show at the time and I used to have really early morning calls for production. I'd start my day at five," she said. "I just remember being in the shower in the morning, washing my hair. I remember huge clumps came out of the front of my head. There was no hiding it in any way and I just remember it coming out in my hands. I got out of the shower and called my producer on the phone and saying there is no way we can shoot today. But it didn't register with people. Always having so much hair, it was almost like people didn't believe me. That was really very, very difficult." Bridges had been diagnosed with Alopecia years before, but it wasn't until her late 30s, when it started coming out in bunches, that she realized she had a serious problem. For years, Bridges was known for her full, curly hair. When the hair loss was small and dime-sized, it had been easy to hide. Now she was filming a TV show where it was important for her look stay consistent. While she wanted to grieve the loss of her hair, she had to contend with her TV show being up for renewal that year. When it came to her work, Bridges "couldn't go bald."   "I couldn't have different looking hair. I hadn't finished producing the actual shows yet," she said. "There's already a lot of shame associated with it anyway, but it made me feel even worse that I had to keep it a secret. I wasn't ashamed because of what was happening to me because it wasn't my fault. But nobody really cared about me and what I was going through. Everyone cared about the machine of work and what I had to do. I really needed to take a minute out to regroup and reassess." In the end, Bridges' contract was not renewed. She said that although "no one would actually admit it, I think (it was due to) my hair loss. I kissed my television career goodbye when I lost my hair. I still get hundreds of emails for people asking why aren't you on TV, why don't you have a TV show? We don't realize how important it is culturally for women (to have hair)." After her 40th birthday, Bridges borrowed her brother's hair clippers and made the big shave. Now 46, she is completely bald. She doesn't wear wigs as a personal choice, believing they would interfere with her active lifestyle. "The idea of slapping on a wig before I go snowboarding then putting a helmet on top of it, anyone who knows me knows that's not going to work," she said. Despite that many find her decision to be bald brave, some days it is still very hard.  "It's a very sort of public disease, but I think it's so personal and the way that you handle and deal with it is so very personal, yet how you deal with it is so public," Bridges said. "Going bald is harder than being bald ... I think people just assume that because I don't wear a wig it's very easy. But it's very, very hard. Some days it's a piece of cake and other days you're sort of brought to your knees. People can be very cruel. They make a lot of assumptions about you. People really thought I was sick and that I was dying. My mother finally learned how to use the Internet and she Googled something and there was speculation, chatter about me having cancer and even though my mother knew that I didn't have cancer, she bought into what was out there. And that's I think that is a very difficult thing to live with, always living with this cloud that hovers over -- that you're sick or that you're dying and there's a lot of emotional baggage for the people you interact with. How they deal with you. How they approach you. Navigating your way through this thing is really tough." Thirty-six-year-old Stephanie Gale of Atlanta, Ga. is also dealing with hair loss due to Alopecia. She started to notice her hair loss eight years ago in her last year of college. She thought she was losing her hair due to stress surrounding her finals, assuming it would grow back. But the bald spots only kept getting bigger. "I started to really worry," Gale said. "I started to get depressed. Mainly my goal was to find hairstyles that would cover it up, so that it wouldn't be noticeable." Gale started wearing weaves to cover the hair loss and went to three dermatologists looking for answers. In each case the doctors told her it was an autoimmune deficiency problem. Later Gale would learn she had a hyperactive thyroid -- one of the many causes of hair loss in women. Gale is now undergoing treatment for hair replacement therapy once a month, which involve injections in her scalp, taking vitamin supplements, various ointments she puts on her scalp twice a day and Rogaine. "It's been pretty rough," Gale said. "I've had it a long time so I've gotten more used to it than I had when I was initially diagnosed. I was really depressed about it at first." Gale wears wigs when out and a scarf on her head at home. She finds wearing wigs makes it easier for her to deal with the disease publicly, and at one point, she sought talk therapy to deal with the loss. "They taught me that hair is more like an accessory. You won't die if you don't have any hair. It's just something on your head. It doesn't define you as a person. It doesn't make you who you are," she said. Gale is also married and found her husband's love and support very helpful. "He knows all about my condition," she said. "He doesn't really care if I don't have hair or not." Gale thinks hair loss can be very different psychologically for Black women, many of whom deal with negative views about their natural hair or pine for longer hair. She said when in school, almost every girl she knew permed her hair, wore extensions or did both -- many wanting long hair. "Long hair was considered beautiful and on some levels it still is," Gale said. "Long hair is considered good hair. Basically some people believed that if you have really short hair it's not feminine." That desire for long hair can have dire consequences if hair isn't cared for properly. No one knows that more than salon owner and hair care expert Debra Small of St. Louis, Mo. Small is the creator of the HPO Spa Treatments hair care line and manages the site NaturallyCurly.com. A stylist for more than 20 years, Black women and baldness is a reality she confronts daily at her boutique, New York New York Hair Design in St. Louis. "I see it all the time," Small said. "Due to artificial hair, due to bonding, braids and stress. Misuse of brushing hair." Small, who is running a healthy hair campaign to educate Black women about their hair, vigorously consults her clients to find ways to get the look they want without damaging their hair. Of her clients who receive chemical relaxers, Small is encourages them to reduce the number of relaxers they have a year (from one every four-to-six weeks, to 12 weeks without a touch-up). Also, 25 percent of Small's relaxer clients are transitioning to wearing their hair natural.   "When you apply the relaxer there really isn't that much leeway (in a four-to-six week cycle). Hair only grows one-fourth of an inch per month," Small said, adding that our hair is at its strongest at the root, but if relaxers are applied with too much frequency hair will "get weaker and weaker at the root. "If you condition your hair you can train it to go longer over a period time, seeing the hair get longer. In extending the relaxer the hair is growing," she said. There are many causes of hair loss in women. Even changes in hormone levels due to menopause can cause hair loss, but so much of the loss Small sees as a beautician is preventable. Small suggests that people who wear their hair in braids or use weaves pay attention to their hair -- if it seems to be braided too tight. Blisters will form at the root of the scalp, meaning there isn't enough blood circulation, which leads to hair damage. Small also stresses that people watch their diet. Hair is 97 percent protein and various vitamin deficiencies, like not enough Vitamin B, will cause problems as well. Small also recommends roller sets to dry hair, weekly deep conditioners and dressing the hair at night. "Use a polyester scarf so natural oils will stay in your hair. Use less gel and brushes, but if you use gel, use non-alcohol based gel," Small said. "Put on light oil, like jojoba oil or olive oil to create moisture retention." Small also recommends that if you do use hair weaves to stay away from bonding. Bonding should never be placed on hair or scalp because when the hair is removed it rips hair out, snatching it out from the root. For those who have sewn-in weaves, Small recommends that women should visit their salon every two weeks for maintenance. She said often it is hard for women with weaves to properly shampoo their hair and it's best to have the hair stylist do it. Improperly washed hair that has a weave sewn in can cause other problems, like mildewing of the scalp, leading to dandruff and other scalp problems.   By going to a stylist to help you maintain your weave, Small points out they can fix any damaged threads and prevent the hair from becoming matted. She also says women should not comb or brush their hair too strenuously if they have a weave, as that too can cause damage. Women should also be mindful to secure their hair at night by tying it up to also prevent damage. Weaves also shouldn't be worn for longer than six-to-eight weeks, says Small. Hair loss doesn't have to be permanent. It can be preventable. But even if strikes, women have options on how to deal and cope with such a loss. It's not the end of anything. For Sheila Bridges she saw her hair loss as an opportunity to show women how they are more than their hair. "It took me a lot of time, but I had to redefine my idea of what it is to be beautiful and feminine," Bridges said. "Because, otherwise, you're not getting any positive reinforcement or feedback from the rest of the world or the media. You have to be able to hold your head up high. I get as many emails about hair loss, from both men and women. Some people don't even have Alopecia. It makes an impact. In my own small way, I feel like I'm doing the right thing because it's helpful for people to see women without hair."

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