The Reality of Alopecia Areata: Dispelling Myths and Raising Awareness, Part 2

In this follow-up episode, Dr Senna tackles seven of the most common myths surrounding alopecia areata (AA)—from the belief that stress is the sole cause to misconceptions about hygiene, diet, and permanence. She also clarifies treatment pathways, discusses how to differentiate AA from other hair loss conditions, and underscores why timely diagnosis and treatment matter. With actionable insights and heartfelt stories, this episode challenges stigma and advocates for improved awareness, access, and support—particularly for patients navigating the emotional complexities of hair loss. 

For more insights, visit our Alopecia Areata Expert Insights: Addressing Key Challenges and Advancing Patient Care webpage.

Dr Maryanne Makredes Senna: So, with that, let's move on to some common myths and misconceptions.

Myth number 1: Alopecia areata is caused by stress alone.
Well, the reality here is, like I mentioned, while some patients do report a major stressor occurring prior to the onset of their first episode of alopecia areata or a flare in their condition, by and large most patients do not have any history of such stress occurring. There is some scientific data to suggest that there can be something called neurogenic inflammation where stress can release certain chemicals that can help to reduce, or neuropeptides that can reduce the immune privilege around the hair follicle, but this is not the case in all patients. 

Some patients will show up with alopecia areata, not have a family history, not have any idea of what triggered this at all—it just came out of the clear blue sky. Unfortunately, this is the case that’s more common than not. Something that I hear from my AA patients a lot is that people say, "You're doing this to yourself, don't be so stressed out, try to take it easy," and that makes them feel more and more isolated with their disease. So it's really important that we realize that there are a lot of factors—there are some genetic factors, but not always, and there are environmental factors, maybe but not always. There’s a lot about what causes alopecia areata that we don't fully understand, right? But to say to someone that it’s caused by their stress alone is not true. Certainly, in patients who very clearly have stress-induced cases, alleviation of stress and trying to mediate that stress is important. But in the vast majority of cases, it is not just stress that causes alopecia areata.

Myth number 2: Alopecia areata is a result of poor hygiene or hair care. Absolutely not. Now there are some forms of hair loss that might be related to hair care, right? Like most commonly traction alopecia, where if people are pulling their hair in the front back really, really tight, it can pull and lead to hair loss. But this is not what's going on in alopecia areata. These people do not have poor hygiene. They don’t have poor hair care. They’re usually not doing anything different to their scalp than people, or hair, without alopecia areata do, so hair hygiene has no correlation with alopecia areata. It is an autoimmune condition and not related to hair washing, styling, or scalp cleanliness.

Okay, myth number 3: Alopecia areata is merely a cosmetic concern. Oh man, this one bugs me a lot. Okay, so in reality, as I mentioned, alopecia areata can have significant psychosocial impacts including anxiety, depression, even suicidal ideation, and low self-esteem. It's not just a cosmetic issue, but one that affects quality of life. 

In addition, as I mentioned, it's very clearly an autoimmune disease. It has similar genetic loci involved when we look at these genetic studies that have been implicated in a number of other autoimmune diseases, as well as associations with other comorbidities, most notably atopic dermatitis or eczema. This is an autoimmune disease. Just like the immune cells attack joints in inflammatory arthritis, or the skin in psoriasis, or the pancreas in type 1 diabetes, the immune cells in alopecia areata attack the hair follicle. We don't consider other autoimmune diseases cosmetic or somehow unimportant to treat, and it is imperative that remove that notion from how we think about AA as well. Because, again, when we say, “Oh it's just your hair,” to people, right? That absolutely isolates these patients, adds to their psychosocial burden, and it's just unfair frankly because like any other autoimmune disease, it's not something that the patients can control, and we shouldn't minimize it just because the autoimmune attack is on the hair follicle and not on some other part of the body.

Myth number 4: Alopecia areata only affects scalp hair. Well, as I mentioned, the reality is alopecia areata can affect any hair-bearing area of the body, including eyebrows, eyelashes, beards, and body hair. And in the case of eyebrows and eyelashes, this can be particularly devastating for patients. You know, in the US anyway, male androgenetic alopecia, or male-pattern hair thinning, is pretty common, culturally accepted, right? So if patients who are male aren’t bothered by their scalp hair being gone, right, they can kind of work with that if they have alopecia areata, and of course that varies from patient to patient. But some of them can manage it well because it's not like they look dramatically different. It's in keeping with what we would expect males sometimes to look like. When they start to lose their eyebrows and eyelashes, that is a complete game changer. Also, in patients of all sexes and all ages, when you start to lose your eyebrows and eyelashes, that's when people start to think, “oh, this is someone who is sick,” right? Maybe they're undergoing chemotherapy or maybe they have some other problem that's happening, because the eyebrows and eyelashes are so visible, right? They're on their face. It's very hard to camouflage. And in the case of beard hair, this can also have important cultural or religious significance for some patients. And so, it's important that when we're evaluating these patients that we're taking all of these various sites into consideration.

Okay, myth number 5: Dietary changes alone can cure AA. I have a lot of patients who come into me and are like, "Oh, should I go on a gluten-free diet or a dairy-free diet or an autoimmune protocol diet?" And it's like, no. Don't drive yourself crazy unless you have celiac disease and you're supposed to avoid gluten or unless you have a lactose intolerance or unless you have an allergy to a specific food, dietary changes alone do not cure alopecia areata. I wish it was that simple, right? The reality is while a healthy diet supports overall well-being and certainly a well-balanced healthy diet is good for our overall health, there's no scientific evidence that dietary changes alone can cure alopecia areata. It typically requires, especially in severe cases, medical evaluation and possible intervention.

Myth number 6: The hair loss is always permanent. As I mentioned, because of where the autoimmune attack happens in alopecia areata, where it's away from the stem cell compartment of the hair follicle, hair regrowth is possible in many alopecia areata cases. But as I mentioned, it can be unpredictable, right? Some patients can experience full regrowth while others may have recurrent episodes or persistent patchy loss. In severe cases of alopecia areata, studies have shown that treating earlier leads to better patient outcomes. The longer a patient has severe alopecia areata, and especially if they've had severe alopecia areata greater than 5 to 7 years—and by severe, I mean definitely 50% or more scalp hair loss—it becomes increasingly harder for them to have hairy regrowth, even on our best medications available now, like the Jak inhibitors. So early intervention, early treatment, early evaluation is critical to ensuring that these patients have the best outcomes.

Myth number 7: There's no treatment for alopecia areata. Well, I have to tell you, this is such a wonderful time to be treating this patient population because in the most severe forms of the disease, for a long time we didn't have any treatments that really worked, and now we do. So, while there's no cure, right? There's no medication, there's few things, right, in health and disease where we can give someone something, they take it for a short time, and then it goes away, right? Blood pressure—you don't take a blood pressure pill for 3 months and then expect to have good blood pressure your whole life if you go off the medication, right? If you have high cholesterol, you don't expect to take a cholesterol medication for a couple of weeks and then have great cholesterol the rest of your life off the medication. It's the same thing with the treatments that we have for alopecia areata. There's not a cure, but the treatments can be really good at successfully regrowing hair in alopecia areata. And depending on how extensive the alopecia areata is, the most commonly used treatments that we use are corticosteroids, either injected into the scalp, sometimes orally, sometimes topically; JAK inhibitors, these are the FDA-approved oral medications that have recently become available to us and have really revolutionized our ability to treat severe alopecia areata; and sometimes immunotherapy. And so, we have these wonderful options, but again, as I mentioned, it's important to initiate as early as possible for best outcomes.

Okay, so we've talked about why early diagnosis is crucial, because the earlier you intervene, the better treatment outcomes you have. And when patients have their hair and it's regrown, you see a significant improvement in their psychological health, their wellbeing, their overall, just happiness, really. 

I just want to speak for a minute on– Typically alopecia areata is a pretty clear clinical diagnosis. We don't often have to do biopsies because it has a very characteristic appearance, with this sort of round, circular patch of complete hair loss, where we can just tell exactly what's going on. There are a few types of things that can occur on the scalp that might make a diagnosis challenging. And so, if we think about these cases, I'll just mention them quickly in case you see them and it helps you to differentiate alopecia areata from other types of hair loss. 

So, the first is tinea capitis or scalp ringworm. So, these patients will present with sometimes round patches of hair loss, but typically these patients will have scalp itching, right? Because there's a fungal infection of the scalp that's causing the hair loss and so they'll be itchy, where, as I mentioned, alopecia areata is typically completely asymptomatic. In addition, because there's a fungal infection of the skin and hair follicle causing the hair loss, the skin in the patch of hair loss is typically red, or in darker skin types can be hyperpigmented, or flaky, and so those are clues that you probably would want to do a fungal culture and rule out the potential for a scalp ringworm or tinea capitis.

Triangular alopecia. So, this is kind of a really cool one, and I do see it a lot and it even tricks me sometimes if, I don't know, particularly an adult has it. This is almost like an alopecia birthmark, okay? It's basically a non-scarring patch of hair loss that's usually seen near the temple, and sometimes it can affect both temples but, more often than not, I’d say 90% of the time or more, It only affects one side. So, one area of the temple has a patch of hair loss. It's usually a small sort of triangular shape or oval or round shape of hair loss. The cause of this is not known. Most cases are not genetic. They're sporadic. And usually, it's first noted in kids between the ages of 2 and 9 years, especially around 2, because if it's present at birth, they start to get a lot more hair at that time, and it's noted that, “Oh, the hair's not growing in this area.” It affects both men and women and is more commonly seen in light-skinned people. The spot of hair loss importantly remains unchanged throughout life, and there's no clinical signs of inflammation or scarring. So that's one that’s not so common, I'd say. I think the rates of incidence for something like this are 0.1%, okay? So not super common but definitely can mimic alopecia areata.

Patchy scarring alopecia. So, the scarring alopecia, these are other autoimmune forms of hair loss that lead to permanent loss of hair follicles, right? These scarring alopecias. And that's because, unlike an alopecia areata, the inflammation is not around the lower part of the hair follicle, but in patchy scarring alopecia, it's around that stem cell compartment. So, the inflammation, if it goes on untreated, actually destroys the hair follicle, leading to scarring alopecia or scarring hair loss. Sometimes patches can be round and mimic alopecia areata, but in the case of scarring alopecia, the things that can help you differentiate this is that the hair little tiny follicle openings that you see preserved in the patch of hair loss in alopecia areata are lost in patches of scarring alopecia. It just looks like smooth, thin, scarred skin. In addition, unlike in alopecia areata, there's notable redness and flaking that hugs the hair follicles as they emerge from the scalp, and these are usually seen in the periphery of the hair loss patch.

And then lastly, trichotillomania or hair pulling disorder. This is thought to be in sort of the line of some other obsessive compulsive disorders. And in this case, the hair loss is caused by actual twirling, pulling, or rubbing at the scalp or sometimes eyebrows. And usually, patients will have patches of hair loss, but there won't be complete scalp hair loss like you see in alopecia areata. There will be hairs of varying lengths within the patch, because it's very hard, right, for a patient to pull all of their hairs out in one area down to the same level. So that's why we see hairs with varying levels within it. As I mentioned, it can commonly be seen on the scalp, but also sometimes the eyebrows and the patches tend to be more geometric in shape than round. And tend to, if they're on the scalp, tend to be more pronounced on the patient's dominant-hand side, because it's just more easily pulled on that side. 

So those are some of the things that sometimes we have to differentiate from alopecia areata. But in general, like I mentioned, alopecia areata is a pretty straightforward clinical diagnosis. If you're ever not sure what you're dealing with, no one would ever fault you for sending your patient to a dermatologist, this is what we do.

So, I just want to close by summarizing what we talked about today. You know, it’s really important that we are aware of alopecia areata, that we consider it to be an important autoimmune condition—a medical condition, not cosmetic condition—and that we recognize the significant psychosocial, emotional aspect it can have for patients who are affected by it. Our misconceptions negatively impact patients, right? We talked about the stigma and psychological effects that can result from patients having alopecia areata and just having their condition be misperceived. So, the role for us as healthcare providers in awareness is critical, right? 

Educating patients when they present to us, combating misinformation and ensuring that we're helping to aid patients with alopecia areata in accessing the proper treatments and providers, dermatologists who could help them ensure that they have early, timely, and effective treatment. 
There are of course, you know, great patient resources for alopecia areata. I'll name two—there's the Children's Alopecia Project, there's also the National Alopecia Areata Foundation, which is the primary group that I refer my patients to. Also important to know is that the American Academy of Dermatology offers Camp Discovery every summer in different locations across the United States. I've sent a number of my patients to this who have alopecia areata. It's a free camp for kids who deal with various types of skin disease including alopecia areata, and it's just a wonderful week where they're surrounded by kids who are dealing with similar things that they are and really just an excellent experience for kids specifically and teens dealing with these conditions. 

So today, just to recap, we talked about alopecia areata facts, we debunked some myths, and really hopefully helped you to understand the importance of early intervention and treatment. So, thank you for listening. I hope that you found this helpful, and I encourage you all to stay informed and empathetic. And if you're ever in doubt, your dermatology colleagues are here and happy to help. So thank you so much.