The Reality of Alopecia Areata: Dispelling Myths and Raising Awareness, Part 1

In this two-part podcast, Maryanne Makredes Senna, MD—a board-certified dermatologist and director of the Leahy Hair Loss Center of Excellence—delivers an engaging discussion of alopecia areata. With clarity and compassion, Dr Senna aims to equip health care professionals with the tools to better recognize, diagnose, and treat this autoimmune condition. From dispelling persistent myths to emphasizing the emotional toll and medical seriousness of the disease, this series underscores the critical importance of early diagnosis, informed intervention, and empathetic care. 

In this first episode, Dr Senna introduces the clinical fundamentals of alopecia areata, including its immunologic underpinnings, diagnostic challenges, and association with other medical conditions. Dr Senna demystifies the disease’s unpredictable course and highlights the significant psychological burden it places on patients. This episode lays a vital foundation for health care providers to understand alopecia areata as not a cosmetic concern but a serious autoimmune disorder that demands early and thoughtful care. 

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

Dr Maryanne Makredes Senna: Hi everyone, and thank you for joining this podcast. Today, we're going to be talking about “The Reality of Alopecia Areata: Dispelling Myths and Raising Awareness.” My name is Maryanne Makredes Senna. I'm a board-certified dermatologist and hair loss specialist. I'm an assistant professor of Dermatology at Harvard Medical School and the director of the Lahey Hair Loss Center of Excellence in Burlington, Massachusetts, which is part of Beth Israel Lahey Health at Lahey Hospital and Medical Center. I treat a lot of alopecia areata patients. I've had alopecia areata myself. So, I'm really excited to talk with you today about this important topic that I think is critical for all health care providers to be aware of if they're coming into contact with patients who have alopecia areata. 

So, the podcast objectives for today will be to define alopecia areata and differentiate it from common misconceptions, to debunk common myths about alopecia areata, and importantly, to raise awareness about the need for early diagnosis, timely medical intervention, and what treatment options are available. 

So, why is understanding alopecia areata so vital for health care professionals? Well, alopecia areata, or AA for short, affects about 2% of people in the United States. That's about 5.3 million people in the United States alone, making it the second most common type of hair loss after androgenetic alopecia. While many patients will develop a patch or two that will spontaneously resolve, up to 25% of patients with alopecia areata will develop the most severe forms of the disease, with near-complete or complete scalp hair loss and/or body hair loss. And our clinical trials have shown that treating earlier, in these cases especially, leads to better outcomes. So, early recognition and intervention is key. 

Alopecia areata also carries with it a very high psychosocial burden and can be associated with other medical conditions. And we will address these during the podcast as well. 

So, first, let's start off by understanding a little bit more about alopecia areata. So, what is alopecia areata? Alopecia areata, or AA, is a nonscarring hair loss disorder that can affect people of all ages, all races, both sexes, and can occur on any hair-bearing site, including facial hair and body hair. By nonscarring, this means that technically, it is not permanent hair loss. The most common form is patchy AA, where patients develop round, circular patches of hair loss on the scalp or elsewhere. Very rarely are there any associated symptoms like itching, flaking, or redness. Most patients are completely asymptomatic; 50% or more of patients with a few patches will spontaneously regrow their hair back within one year without treatment. But almost all will experience more than one episode of the disease throughout their lifetime. 

And as I mentioned previously, up to 25% of patients with alopecia areata will progress to alopecia totalis, which is complete scalp hair loss, or alopecia universalis, which means complete scalp, body, facial hair loss, from which full recovery without treatment is very unusual. This happens in less than 10% of patients. 

Some patients with alopecia areata may also have nail involvement. And this can present as small pits in the nails or longitudinal ridges. And in more severe cases, there could actually even be complete obliteration of the nail plate. 

The course of alopecia areata can be unpredictable. And when patients present with patchy hair loss, there's no blood test or biopsy or anything that we can do to be able to help them predict exactly what their course will look like. And this, understandably, makes the psychosocial burden for these patients incredibly high. 

So, what causes alopecia areata? Well, what's really cool about the hair follicle is that, like other unique body sites, it has something called immune privilege. You can think about immune privilege as sort of a shield that's set up around these privileged body sites, which include the hair follicle, the maternal-fetal unit when a woman is pregnant, the testes, parts of the brain, and parts of the eye. Okay, these are the only body sites that have this immune privilege. And you can think of it as a shield around these vulnerable areas of the body that protect these sites from autoimmune attack. And so, they send out signals to the immune system that says, "This is a safe place. This is an important part of the body. Do not attack here." And it is thought that one of the first key steps in the development of alopecia areata is the collapse of that protective immune privilege. And although there are some environmental factors or triggers that have been associated with potentially leading to the collapse of the immune privilege, there's really not great data on exactly what sets this into motion. 

Once this immune privilege collapses, though, then immune cells are able to come in and form an autoimmune attack against the hair follicle. And the inflammatory cells in alopecia areata specifically attack the antigen or growth phase hair follicles. Once these hair follicles that are affected by AA are shed, the inflammation causes the hair follicles to remain dormant. And they cannot enter back into the antigen growth phase, leading to hair loss. 

The location of this immune attack is at the level of the hair follicle, which is low at the bulb of the hair follicle. And this is really important because it is away from the stem cell compartment of the hair follicle. The stem cells are what are needed to regenerate a hair follicle. And when they are destroyed, it can lead to permanent hair loss. Luckily, because the location of the immune attack in alopecia areata is lower and away from the stem cell compartment of the hair follicle, the stem cells are not affected. And at least early on, there is not permanent destruction of the hair follicle unit, and regrowth of the hair remains possible. And this is why it's known as a nonscarring form of alopecia. 

Proteins called cytokines that stimulate the immune response in alopecia areata perpetuate inflammation through an immune pathway called the JAK-STAT pathway. These cytokines primarily are IL-15 and interferon gamma. And importantly, since June 2022, there have been several JAK inhibitor medications approved by the US FDA for the treatment of severe alopecia areata. These medications work by blocking the JAK-STAT pathway, disrupting the inflammatory cycle, and allowing the hair to regrow. 

So, what do we know about the risk factors and potential environmental triggers with regard to alopecia areata? Well, evidence suggests that alopecia areata is a complex immune-mediated disease determined by environmental and genetic factors. Only about 15% of patients with alopecia areata have a family history. And if we look at identical twin studies of AA, there is about a 50% concordance rate between monozygotic twins, indicating incomplete penetrance. A genome-wide association study identified 14 loci in humans associated with AA, and most of these genetic loci are involved in regulating immune function. Interestingly, the genetic loci identified in AA were similar to those implicated in other autoimmune diseases, including rheumatoid arthritis, type 1 diabetes, celiac disease, lupus, multiple sclerosis, and psoriasis. Additionally, genes implicated in atopic dermatitis or eczema have also been shown to be present in patients with alopecia areata. 

While no clear environmental triggers for the development of alopecia areata have been identified, patients will sometimes report a significant immunological trigger such as a major infection or an illness or significant allergic exposure prior to the onset of disease or a flare in their AA, while others report extreme emotional stress like loss of a loved one, a bad divorce, or something similar that's a major life event that can cause stress. And this sometimes will be reported as preceding the onset of a disease or a flare in the disease. But that's not the case in all patient cases. So, it's hard to know exactly how some of these environmental factors may play a role in disrupting immune privilege and perpetuating an inflammatory response. 

As I mentioned previously, alopecia areata affects 2% of the population. The onset typically occurs in the first four decades of life, but it affects people of all ages. Data from the National Alopecia Areata Registry showed 2 peaks in the age of onset—one between the ages of 1 and 12 years of age, and the other between the ages of 25 and 35 years of age. 

There are some factors that have been shown to portend a poor prognosis in alopecia areata patients, meaning that patients with these risk factors might have a more persistent or severe disease course. This is particularly important, and I will often review it with patients who present for AA, especially if they're kids or adolescents, or even an adult for the first time. Because if they have multiple factors, right, you might say, "Gosh, you know, it might be more likely that you will have a more persistent course." Whereas if they have none of these factors, then you can't 100% guarantee, but it might be more likely that they do not have as persistent a disease course. 

So, these factors that portend a poor prognosis in alopecia areata include childhood onset of disease; longer duration of hair loss from AA—so, if someone has patchy hair loss from alopecia areata for 10 years rather than just 1 year; an ophiasis pattern—so, this is a specific pattern of alopecia areata that can be really recalcitrant to treatment, which affects the back of the scalp in an ear-to-ear band distribution. That's called the ophiasis pattern, and if that's present, that's one of the factors that can portend a poorer prognosis. Nail involvement, the idea here being that if you have nail involvement, it's more systemic, the inflammation, right? It's not just localized to the scalp. If there's a family history of alopecia areata, that can also be a factor. Or if there's a history in the patient of allergies, eczema, or another atopic condition. Obviously, too, if a patient has severe alopecia areata, right? Complete scalp loss, complete scalp and body hair loss. Then that, too, obviously, portends a poorer prognosis overall. As we said, without treatment, less than 10% of those cases spontaneously improve. 

Alopecia areata, as I mentioned, is associated with medical comorbidities, the most common being eczema or atopic dermatitis, which can be present in about 30% of patients who have alopecia areata. And this is important because I see clinically all the time that in patients who have moderate-to-severe eczema and alopecia areata, good control over their eczema and allergies is key to ensuring good, better control over their alopecia areata. There seems to be a direct immunological effect in many of these patients. Other common conditions that are seen in patients with alopecia areata include allergic rhinitis and thyroid disease, while vitiligo, pernicious anemia, and other conditions have also less commonly been associated with alopecia areata. 

So, it's difficult to talk about alopecia areata without also mentioning the significant emotional and psychological effect that it has on patients. Although not physically debilitating, alopecia areata can be difficult to manage and can have a devastating impact on the psychological well-being of patients. And dermatologists and hair loss specialists who see these patients clearly understand that while not life-threatening, alopecia areata can be very life-altering for patients, especially those with severe disease. 

This is because, unlike other autoimmune conditions that also can be very difficult for patients to deal with, right? Like type 1 diabetes, for example. That can be a very stressful diagnosis as well, but a patient is not forced to share that with anyone or the public unless they choose to, right? Alopecia areata, this is a very visible disease. Hair is incredibly important not only to our self-identity, but also in evolutionary biology. It's a display of fitness and health. So, while patients with alopecia areata feel healthy and know that they're healthy, they look in the mirror and they don't look like themselves. And when they're out in public, we hear all the time that they're being told—“Oh,”—you know, approached by strangers—“Oh, I had cancer too, and you'll get through this.” Or doors being held for them, or people giving them these sideward smiles. And so, it's—not only is a lack of privacy with what you're going through when you have alopecia areata, but also, there can be a stigma that's associated with this. And patients for some time have reported the stigma they feel when they have extensive hair loss. And a recent study was done that really highlighted this, and I just want to talk about this study for a minute. 

So, this was a study published in JAMA Dermatology. So, the authors made 6 portrait images that were created using artificial intelligence and stock images, okay? So, they took a photo of a male and a photo of a female. The two images initially were of people with no hair loss on the scalp or face. Two other images showed people, the same people, with complete scalp hair loss, but no eyebrow or eyelash loss. And then, the last 2 images showed those exact same people with no scalp hair and no eyebrows or eyelashes, right? So, the 2 images are either male or female, full hair, eyebrows, and eyelashes. Second one, just scalp hair loss for the female and male, but they have their eyebrows and eyelashes. And then the last one, no hair at all, right? And so, internet respondents participated in a survey where they were showed one of these randomly selected portraits, and they were used to answer a series of stigma-related questions. And what's interesting here is that endorsement of every stigma item increased as the alopecia severity increased, including the percentage of respondents believing the individual pictured was “sick” or “unattractive.” Further, when responding to photos of people with hair loss, respondents were more likely to disagree with the statements, "I would find the person in this photo attractive" and "I wouldn't mind having physical contact with the person in this photo." 

And this just drives home for us what we hear from our patients all the time, right? The loss of their hair leads to a loss in how they're able to live their life. Because it affects their relationships. It affects their ability to do public-facing and other jobs. It affects just about every aspect of their lives. It's, therefore, not surprising that patients with alopecia areata consistently demonstrate poorer health-related quality of life than controls, with domains of vitality, mental health, emotion, and social functioning most affected. Additionally, it's been shown that alopecia areata patients are 2.5 times more likely than patients without alopecia areata to have anxiety and 2.7 times more likely to have depression than people without AA. And this is particularly true for adult patients with more severe hair loss. Very sadly, suicidal ideation has been reported in up to 12.8% of patients with alopecia areata. And bullying is not uncommon, especially towards adolescent AA patients. 

This really highlights the importance of increasing awareness around AA and ensuring that affected patients are able to access the medical care and treatments they need to address their autoimmune disease effectively. It was only in the past 5 or so years that all over the news, there was the story of a young girl who took her own life because she was being bullied at school, with people ripping off her hat or pulling off her wig. And, unfortunately, this is not uncommon. So, by busting through these common myths and misconceptions, recognizing alopecia areata as an autoimmune disease that requires treatment, we can really help these patients. 

Another just brief word on something I've referred to as a cumulative life course impairment. So, this was first described in psoriasis and some other skin diseases. And the idea is that patients—when they develop these severe autoimmune conditions young—the impacts of their autoimmune disease, like alopecia areata, can be so significant that the trajectory of the patient's life ends up unfolding in a different way than it would have if they did not have alopecia areata. 

Let me give you an example of how this might look. So, I've had a patient who was a really successful both scholar and athlete in the end of middle school, beginning of high school, right? Star on the basketball team, even as a freshman. Fabulous grades, likely slated to have a scholarship to a good college. Tons of friends, very social, well-adjusted young man. He develops severe alopecia areata. Acutely—loses all of his hair, eyebrows, and is devastated by this. And does not want to go to school. So, his grades start to suffer. Does not want to go to practice because he's so depressed about what's going on. And he withdraws socially from his friend groups and other activities he used to enjoy. You know, these sorts of things, particularly when they happen in adolescence, can really shape the trajectory of a young person's life. Where if they don't have timely intervention, proper treatment, proper psychosocial and emotional support, they can really end up falling off track. And their life can end up looking a lot different than it would have been had they not developed the disease. So, as health care providers, we really need to be aware of this and address alopecia areata as an important autoimmune condition.