Alopecia Areata

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    Lindsay Walter

    How I Feel About the Oscars Altercation as Someone With Alopecia

    Alopecia: a condition that a lot more people have heard of now. This is a real condition that affects many people in various forms and ways. When I watched the Oscars altercation between Will Smith and Chris Rock, I was not expecting it at all. At first, it didn’t seem real. But, it has happened and now we are talking about alopecia, so here are my thoughts as someone who has had alopecia since the age of 2 and has been through a lot. I can truly say that losing your hair is very difficult and very emotional. I believe both men were in the wrong and handled the situation very poorly. Jada has been very open and honest for several years about her struggle with alopecia. I have struggled too. I don’t know whether Chris or the scriptwriter was aware of this, but there was definitely a missed opportunity to educate the world about alopecia. There are certain things that are just simply not funny and should not be made fun of, such as a person’s appearance when they have voiced numerous times they are not OK with something they can not control. The look on Jada’s face — I felt it to my core. I have been in social settings where a joke and comments have been made about my alopecia and it is humiliating and uncomfortable. Her look spoke volumes. She is the one we should be focusing on at this moment, regardless of her personal life and past issues in the news. Chris Rock was in the wrong for making the joke, because at the end of the day, he chose to speak those words. But, I believe Will Smith was also wrong for the way he handled it. Yes, he was laughing at the joke, but when he saw the look on his wife’s face, he changed. I believe a better way to handle it would have been to take the following moment to educate on alopecia, stand up for Jada and express his love for who she is as a woman, not what is or isn’t on her head. As a partner you want someone to have your back and stand up for you, though she is powerful and could have done so herself. I applaud Will for standing up for his wife, but violence is absolutely the wrong way to handle the situation. It is very unfortunate that this situation happened, and it never should have unfolded this way. However, one positive takeaway is that people are talking about alopecia, bringing awareness to this condition. It is never “just hair” or “just a joke” because until you have lost your hair, you have no idea the emotional toll that comes along with it. You lose a part of yourself. It is so important to remember that your words carry meaning and magnitude. Being embarrassed on a public stage for the world to see is not OK. As a society, we need to practice empathy. As an advocate in the alopecia community, this has been a tough, yet important time. There has been hurt and loss from a 12-year old girl taking her own life two weeks ago because she was bullied for her alopecia. It is devastating and to read some of the comments and push back on this has been tough. But, I know the importance of standing up for others and what I believe in. Even after all this past week has brought, I can still say alopecia is the greatest gift I never knew I needed. My biggest takeaway is that violence is never the answer. Always choose the high road, but awareness, education, and empathy are so important.

    Brittany Johnson

    How Racism Impacts Black People With Alopecia

    There’s been a lot of conversation recently about alopecia in mainstream media. As a Black woman who has a strong genetic link to alopecia, I have a lot of mixed feelings, as I’m happy people are finally talking about alopecia since it’s very common in the Black community, but I’m unhappy to see how much misinformation is out there about the condition and how little people know about how race interferes with both having and managing the condition. For Black folk, our hair is everything, so this is important. Let’s break this down: What is alopecia? Alopecia is a non-contagious autoimmune disease that can cause hair loss due to the body targeting and damaging its own hair follicles. It can create hair loss anywhere on the body, and while it can sometimes grow back, it’s not guaranteed to. According to the American Academy of Dermatology Association , there are three main types of alopecia: Alopecia areata Alopecia totalis Alopecia universalis Alopecia areata is a patchy baldness that can happen anywhere hair grows, such as the scalp, eyebrows, facial area, etc. Alopecia totalis causes complete baldness of the scalp. The rarest of all the alopecia subtypes is Alopecia universalis. That leaves the entire body hairless and bald. The main (and usually only) symptom of alopecia is hair loss , although the patterns of hair loss may shift. Sometimes there may be more or less hair loss depending on the time of the season, and the hair can even grow back in some spots only to then come out in others. The National Alopecia Areata Association reports that “6.8 million people in the United States and 147 million worldwide have or will develop alopecia areata at some point in their lives.” That being said, alopecia is one of the top five conditions impacting the Black community, representing 8.3% of our dermatology visits . A very very very short (and somewhat personal) history of Black hair Hair is not, and has never been just hair to Black people. I’ll say that again in a bit. Before Africans were enslaved as a part of the transatlantic slave trade, hair served as a means of telling people’s social rank and role in society. Hairstyles were unique and specified down to tribes, health statuses, jobs, and more. Hair told a social story, baked in tradition and culture. When the transatlantic slave trade devastated parts of Africa and the lives that it touched, the enslaved Africans were forced to negate those traditions. Hair took a new meaning, except the ones defining that meaning were the white Europeans and colonists. They compared Black hair to that of an animal, as a means to degrade and strip us away from our pride and history. At times, we tried to find new ways to embrace our hair, but due to the hypersexualization of Black women, there were laws put in place to force Black women to hide their hair (The Tignon Laws) as to not attract white men, which would threaten the status quo for white women. Even then, we did our best to adapt by embracing self-love, but many of us were forced instead to assimilate in order to survive. With centuries worth of negative tropes and stereotypes surrounding Black hair, Black folk resorted to pressing our hair out (anyone else getting flashbacks to the hot comb the night before Christmas or Easter?) because if we didn’t, we ran the risk of being denied jobs, loans, or y’know, just in general being treated worse . Our livelihood became intrinsically linked with how straight we could get our kinks and coils. Permanent chemical relaxers, which have been linked to fibroids , became a norm for Black women. So much so, I was permed at age 6 (way too young) and continued to be well into my adolescence and teenage years. I assumed that that’s just what Black folk did with our hair and that our natural hair was bad and ugly and that’s why. I remember my grandmother laying my edges with the thick cream that burned my scalp, telling me how we had to get my hair to “hang” and swish back and forth, something our hair doesn’t naturally do at all, unlike Eurocentric hair. Like many people, I wasn’t introduced to my natural hair until I was 18 years old, when I had to learn how to take care of it. I had people criticizing me, telling me that it’d stop me from getting jobs and opportunities, made me uglier, and some people even called me names — but I stood strong and kept it. I eventually learned to love parts of myself and my Blackness that I never loved before I went natural because I had to take extra time and care and really learn my hair in ways I never did before. However, no matter how much you love your hair, it doesn’t change the fact that I’d be wearing my 4A/4B kinky coils in a white supremacist society that favors either looser curls or no curls, to begin with. You can’t self-love your way out of racism. That’s why just now in 2022, the house of representatives passed “The Crown Act, ” a law prohibiting race-based hair discrimination. One of the “fun” parts is that Black people have been and are ridiculed for their hair regardless of what state they wear it in. We get degraded for wearing our natural hair, but then if we permanently straighten our hair we are seen as self-hating. Countless jokes and memes on the internet surround Black people wearing weaves and wigs, only for the same techniques to be stolen and appropriated. We can’t win, and society doesn’t want us to feel pride in our hair for racial and capitalistic reasons (the Black hair industry is only a trillion-dollar industry). To take care of and love your hair as a Black person is a revolutionary act within itself due to how white western society has treated our hair, to the extent that they’ve instilled self-hatred for the unprocessed hair that grows out of our own head. Loving your natural hair shouldn’t be seen as revolutionary, but here we are. How racism impacts Black folk with alopecia Two things I want to drive home: Black people, especially Black women, have been discriminated against and degraded for their hair so badly that it’s caused forms of generational internalized self-hate. Black hair is everything to a lot of Black folk. Alopecia is an autoimmune disease that a large portion of Black folks have, and while it can be treated, it still causes what can be severe hair loss. There have been few studies done on alopecia as far as the epidemiology of the disease. Obviously, I can’t make a blanket statement, but it’s highly coincidental that a disease that disproportionately impacts Black people has few studies done in comparison to other skin-based diseases. The less research there’s been done, the fewer people (read: Black people) know about a condition that so largely impacts them. When Black people, especially women, lose their hair, they’re losing something much larger. Our hair has been a central part of our identities for hundreds of years, whether the narrative was one that we controlled or not. When so much is at stake socially, politically, and internally, all because of how we decide to style our hair, what happens when we lose it? We’re stripped of our history, culture, and even identity. In an ideal world, this all changes. More research is done, we learn more about a disease that our mothers, aunts, and grandparents have experienced, and the lens that the western Eurocentric world looks through when it comes to Black hair is dismantled and shattered. However, that’s not where we are. When a Black person speaks up on their experience with alopecia, it’s imperative that we listen. When jokes are made, no matter how “well-meaning” they may be, they’re still ableist and wrong. It’s time we educate ourselves on the realities of the disease and how they impact a group of people whose cultural history and identity is so tangled up in their kinks and coils. It’s because of racism not many studies are done, and extra emphasis is put on Black women when we lose our hair due to alopecia. That’s our now, but it doesn’t have to be our tomorrow. Hair isn’t just hair for Black folk. Never has been, but maybe hopefully someday it will be.

    Community Voices

    Why Will Smith Has it Wrong, Violence ≠ Advocacy

    Like millions of people around the world, I gasped when Will Smith got on the stage during the Academy Awards and slapped Chris Rock across the face. This after Chris Rock made fun of Jada Pinkett Smith’s medical condition – #AlopeciaAreata .

    As an advocate and mom of a child with diverse needs, I wish I could say this is surprising behaviour – from either man. Sadly, turning disabilities into punchlines is way too common.

    But reacting with violence does not equal advocacy. Rather, it distracts from the real conversation – understanding and accepting a medical condition or disability.

    Listen, I get it. There are times when my frustration level is high and I would love to scream and shout (but never hit). Yet I don’t.

    Why? Because we have enough obstacles to overcome in having an honest and open dialogue about living with a medical condition or disability. Using violence just gives people another reason to tune out.

    Yes, what Chris Rock said was out of line. But it’s nothing compared to what disabled individuals and their families hear each and every day.

    I continue to hear the R word from educators, health professionals and random strangers. It’s even still learnpatientadvocacy.com/blog/2021/3/1/yes-your-advocacy-can....

    Way too many of the conversations I have about my child are deficit based, instead of recognizing and building upon their strengths. Anyone who has attended an IEP meeting (individualized education plan) knows what I’m talking about.

    And this deficit-based approach too often transcends to family, friends and even strangers.

    I empathize with Jada Pinkett Smith living with a visible medical condition as well as having a husband who made Chris Rock’s comment more about him than allowing space for a conversation.

    Lead, don’t be, the conversation

    Imagine if he hadn’t jumped on stage and used violence, but rather used his star power to issue a statement the following day, taking the opportunity to educate people about alopecia. He could’ve explained that 1 in every 500 to 1,000 people in the US or nearly 2% of the general population are affected by alopecia at some point in their lifetime.

    He could’ve shone a light on the condition, breaking down the stigma and showing the beauty and grace of his wife. Imagine how that would have lifted people up who are living with the condition, showing they aren’t alone in their struggles.

    Heck, in his acceptance speech or media interviews, he could have educated people on alopecia. He’s in a privileged position where people listen to what he has to say.

    But instead, he went for a quick hit, swore, and made it about him. Making matters worse, less than an hour later, he gets handed an award and has standing ovation.

    For those of us fighting in the learnpatientadvocacy.com/books/how-to-make-patient-and-famil..., I could never imagine hitting someone, swearing at them, then getting accolades. Nope. I’d likely get arrested and slapped with a restraining order.

    Be the example

    Each and every time I advocate for my child, I try to learnpatientadvocacy.com/blog/2022/1/3/why-kindness-never-go... and use storytelling to bring issues to light. I know any perceived bullying on my end will add yet another obstacle to getting support.

    Sure, in the moment I may want to scream. But rarely does this result in any positive action.

    We need to look for opportunities to raise awareness, educate and break down barriers. Sometimes these appear in the moment and others emerge overtime.

    Instead of giving Chris Rock or Will Smith any more attention on this horrible incident, I ask you – how are you shining the light on what matters to you?

    For me, I will continue writing, speaking and advocating for not only my child, but all autistic kids and their families. I will do so with dignity, kindness and love. And when I do get hit with hate, which happens too often, I will not drop to their level as my child deserves better.

    Community Voices

    Just Need to Vent

    <p>Just Need to Vent</p>
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    Lindsay Walter

    The Importance of Not Comparing Yourself to Others

    We live in a society that is full of influences, airbrushed photos, and platforms that only share the “good.” We don’t see what goes on behind the scenes, but instead see the smiles, the success, and joy. It can be so easy to compare ourselves, our progress (or failures), and journeys to others. I know I definitely have and it can leave us feeling down, defeated, and like we will never measure up, or be good enough. As an athlete, I have always been competing against others, from years of basketball to now running marathons and ultra-marathons. When you’re an athlete you want to win and be the best. Winning and success are fun. But, what happens when you don’t win? How do you deal with that? It can be really hard, especially if you’re not used to it. No one likes to lose, or to feel that they aren’t good enough. Through all of my years of competitive sports, I have learned the importance of not comparing myself to others — not just in athletics, but in life. I lost my hair at age 2, and spent many years comparing myself to my classmates. I never felt beautiful, or that I deserved the things I wanted most in life, because somehow not having hair made me less than. I would always think, “If I just had hair I would have it all in life.” In reality, that was the furthest from the truth. I learned after a lot of heartbreaks and disappointments that it is about hard work, having a positive attitude, being kind, and never giving up on yourself and your goals. I believe we are all given our own path, our own journey for a reason. We all have unique gifts and talents, though it may take longer to discover what those are and how to use them. When I am out running, I feel the most like me. I feel strong, beautiful, and resilient. I love to set a big goal for myself. I can’t control what others do, but I know I can control how hard I work and what I do. When I run, I run for myself, because it makes me happy and empowered. It can be easy to look at someone else’s race, or workout and see their paces and feel defeated in your own workout, or race. However, if you can resist the urge to compare yourself to someone else, you will be happier and it will be easier to keep showing up in all aspects. But how do we actually put this into practice and in our everyday life when we are surrounded and consumed by these influences and others?  For me, it is writing down my goals and posting them on my bathroom mirror. I don’t often share these with others, because they are for me and no one can take that away. The amazing thing about goals and dreams is that they can never be too big. I believe there is no limit to what can be accomplished in life. This feeling and truth is so exciting to me and helps me jump out of bed before the sun to get my run in. I often have to remind myself of the hard truth that not everyone is going to like you, or cheer for you and your success. Even people who were once your friend, or a part of your life. This can be a difficult feeling to navigate through. I know I have struggled with it, and even today still do. But, when you’re standing in your own truth and paving the way, it is just what happens. I use these moments to fuel my fire and to keep me going. Yes, my goals are my own and for my success, but I also find it empowering to have people doubt and not believe in you. I choose to smile and then continue working hard and make it happen anyway. Always bet on yourself and never compare yourself to anyone else, because we never know the full story, or what goes on behind the scenes. If you stay true to you, and set goals for your own self and not to impress others, you will be more successful and happier.

    Community Voices

    Celebrating people with Alopecia Areata from around the world

    I've just completed my annual International Alopecia Day video, this year with over 200 photos of beautiful and proud people with Alopecia from 38 countries. www.youtube.com/watch

    #MyCondition

    Community Voices
    Lindsay Walter

    Why Losing My Hair to Alopecia Was the Best Thing to Happen to Me

    I lost all of my hair at age 2 due to the autoimmune condition alopecia. It was extremely hard growing up hiding under a wig. I was bullied and teased a lot for the way my wig looked and my lack of eyebrows and eyelashes. I felt like an outcast and hated to even look at myself in the mirror. I spent a lot of time feeling sorry for myself and allowing the negative opinions and remarks from others to consume me. I was told and made to believe, “Girls are only pretty when they have hair.” When I look back on my childhood and journey with alopecia these last 28 years, there are so many things I wish I could tell myself. I now see my bald head as the greatest gift I never knew I needed. It is tough to have a visible difference from your peers. It is tough to have people always stare, or do a double-take when I walk into places. It is tough to have people make unwanted comments about my bald head. But, when I look at myself in the mirror today and see my bald head shining back at me, I see strength. I see beauty. I see resilience. I see empowerment. Losing my hair made me very empathetic. I never judge others, because I know exactly how it feels. My alopecia has made me a better athlete. I have embraced this confidence in abilities and myself. I always welcome a challenge and never count myself out. I dream big, set big goals and never let anyone tell me otherwise. I get stares and remarks at races quite often, but I simply smile and run my race — in life and on the course. My hair loss has opened so many doors and opportunities that I wouldn’t have had otherwise. Opportunities to share my story, to talk to kids going through the same things I went through. It is such a gift to have that opportunity to be the person I needed when I was younger. To actually say, “I know exactly how that feels” is empowering. I spent a lot of time being upset and allowing myself to be sad over my alopecia, but today my outlook is completely different. We get to choose our attitudes every single day. It is not what happens to us, but the way we bounce back and respond. If I could tell myself anything, it would be to strive to have a beautiful heart, not a beautiful head. To stay true to whom I am always and what I believe. And that yes, people will be mean, they will hurt you, but always rise above and take the high road. You will never regret it. And work hard at everything you do, set no limits on yourself and your dreams. Losing my hair has shown me that beauty is what is inside of a person. I had to learn adult lessons at a young age, but I am better because of it. Though it took me many years and I hid from the reality I didn’t want to face, I now see my alopecia and hair loss as the greatest gift that could have ever happened to me. I couldn’t imagine myself any other way. I am now succeeding in life while embracing my alopecia, living and thriving with my bald head out shining for the world to see, and have never been happier.

    Community Voices

    I have to go see another Dr. and I am hoping to have a positive outcome those time. What topical has worked for anyone?

    3 people are talking about this