Patients With Alopecia Report High Rates of Internal, External Stigma

Nearly 8 in 10 adults with alopecia areata (AA) report experiencing stigma, according to results from a new national study. Published in The Journal of Dermatology, the results underscore the profound psychosocial burden experienced by adults with AA in the United States, including feelings of embarrassment, negative judgment, or being treated differently because of their condition.¹

This large national survey provides one of the clearest pictures yet of the stigma associated with AA among adults in the United States, highlighting an urgent need for holistic management approaches.

Future research should explore how new treatments for AA affect stigma and whether improvements in visible hair growth directly reduce psychosocial burden. | Image credit: Creative Cat Studio - stock.adobe.com

The study drew data from the 2023 US National Health and Wellness Survey, accounting for 859 diagnosed cases of AA. Among these, 59% classified their disease as mild, 26% as moderate, and 15% as severe.

Regardless of severity, respondents reported stigma, though stigma was more pronounced in those with moderate or severe disease. Overall, 79.2% of respondents reported some form of internalized or external stigma. Three in 4 (74.6%) respondents reported embarrassment due to AA, 66.8% felt judged negatively by others, and 58.7% said they were treated negatively because of their condition.

The takeaways of these findings are consistent with previous research, including a study assessing attitudes toward AA among people without the condition. The cross-sectional online survey showed people images of patients with alopecia; feelings of stigma increased as severity of the condition increased, as did the percentage of people who believed the patient pictured had a medical condition.²

This new survey of patients with AA also revealed notable rates of comorbid mental health conditions.¹ Overall, 40% of respondents reported symptoms of a diagnosed emotional or mental health condition in the past year, and 26% reported sleep-related conditions. One in 4 reported physician-diagnosed depression, higher than national averages. However, treatment uptake was low. Only about 11% of patients reported receiving psychological counseling, and 11% reported using medication for AA-related anxiety, depression, or sleep problems.

Another key finding coming from the survey results was dissatisfaction with hair growth. Overall, 42% of respondents said they were dissatisfied with their current hair growth, with dissatisfaction rising sharply with severity. Among those with mild disease, 32% reported dissatisfaction, which rose to 52% for patients with moderate disease and to 66% for patients with severe disease.

Less than half (37%) of patients were receiving treatment at the time of the survey. Among those who were receiving treatment, topical corticosteroids were the most common therapy. Use of systemic therapies, including Janus kinase (JAK) inhibitors, was reported but remained limited, particularly to patients with mild disease.

The findings point to substantial unmet needs in alopecia areata care. While new therapies, including JAK inhibitors, have expanded treatment options for severe AA, the study suggests that psychosocial support remains underutilized.

“These findings suggest that unmet treatment needs exist, particularly among patients with more severe AA. Further research is warranted to understand how emerging AA treatments may improve stigma and whether the degree of stigma improvement is affected by treatment results,” wrote the researchers.

The researchers noted that due to the study relying on self-reported data, it may introduce recall bias or variability in how patients define disease severity. Still, by weighting survey responses to reflect the US adult population, the researchers were able to provide generalizable insights.

Future research, say the researchers, should explore how new treatments for AA affect stigma and whether improvements in visible hair growth directly reduce psychosocial burden. The group also called for greater attention to disparities, as race and ethnicity may shape both disease experiences and access to care.

References

1. Gauthier G, Hanson KA, Tran H, et al. Perceived stigma among adults with alopecia areata in the United States. J Dermatol. Published online May 23, 2025. doi:10.1111/1346-8138.17786

2. Creadore A, Manjaly P, Li SJ, et al. Evaluation of stigma toward individuals with alopecia. JAMA Dermatol. 2021;157(4):392-398. doi:10.1001/jamadermatol.2020.5732