A Qualitative Review of Misinformation on Alopecia

Alopecia affects 50% of adults by the age of 50 [1]. Hair represents a significant proportion of body image [2]. Alopecia can induce anxiety, social phobia, low self-esteem, suicidal ideation [1, 3], and social stigma [2]. Women with breast cancer have described chemotherapy-associated hair loss as more traumatic than breast surgery [2]. Patients often use the Internet for researching health-related issues [3]. While social media can provide peer support [3], it can create susceptibility to health misinformation. This study aimed to qualitatively review misinformation available online related to alopecia.

A PubMed literature search was performed using the terms “alopecia” AND (“misinformation” OR “disinformation” OR “conspiracy theory”) in May 2024. This yielded 180 results, which were reviewed for suitability by two authors (P.F. and C.O.C.), with four papers containing content relevant for inclusion (Table 1). A Google search was conducted using combinations of the terms “alopecia,” “hair loss,” “misinformation,” “disinformation,” and “conspiracy theory.” The first ten pages of each searched were reviewed for novel misinformation. Further targeted searches using hashtags were conducted on X (formerly Twitter), Facebook, Instagram, and TikTok.

Several alopecia-related myths were identified, including false causes, criticism of conventional treatments, and bogus “natural” cures or remedies (Fig. 1). False causes of alopecia were prevalent online. Hat-wearing was suggested as a cause, although there is no evidence for this, and hats provide important photoprotection for patients with alopecia. Haircare practices, such as hair-brushing and hair-washing, were also implicated, despite a lack of evidence [1]. Chemical and thermal hair straightening was vilified online. While some studies suggest that hair straightening can increase hair fragility, the amount needed to induce this damage is highly variable between individuals and hair types [1]. Some websites, particularly with religious affiliations, stated that hair loss results from certain sexual practices.

Many posts criticized conventional treatments. Minoxidil is used to promote hair growth in androgenetic alopecia and in multiple other conditions. The temporary shedding with minoxidil initiation was manipulated to suggest that minoxidil paradoxically causes permanent alopecia [1]. Finasteride is a 5α-reductase inhibitor used to treat androgenetic alopecia. Several discussion forums on Reddit and other platforms discussed the controversial “Post-Finasteride Syndrome,” associated with a broad range of persistent sexual, physical, and psychological symptoms developing during or after finasteride treatment, which may persist after discontinuation [6]. The mechanism is not understood, but there are several confounding factors which may explain these effects [7]. Topical corticosteroids, frequently prescribed for inflammatory causes of alopecia, were vilified online, often labeled as “toxic,” “skin-thinning,” and “adrenal-suppressing” [8]. Systemic immunomodulatory therapies for AA, such as ciclosporin, methotrexate, and Janus kinase inhibitors, were also condemned as “dangerous chemotherapy” causing “irreversible organ damage,” although they are generally well tolerated [9]. Videos on TikTok discussed the “serious side effects” of topical ruxolitinib, a topical JAK inhibitor, which has recently been approved for vitiligo. These videos referenced a British Broadcasting Corporation article which provided a link to safety information pertaining to oral ruxolitinib, not the cream.

Several alternative “natural” treatments were promoted online for alopecia. While zinc or iron deficiencies can cause or contribute to hair loss such as telogen effluvium, supplementation has no benefit on hair growth if replete [10]. Biotin was widely touted as a miracle supplement for hair loss despite minimal evidence. Biotin can interfere with immunoassays, causing inaccurate blood test results [10]. Several other supplements were marketed, including B vitamin complexes, fish oils, shark cartilage, onion juice, rosemary oil, and saw palmetto, despite limited evidence of efficacy. Horsetail extract (Equisetum arvense) was recommended on Facebook for chemotherapy-induced alopecia. Onion juice has been assessed in small studies for AA, but with limited detail provided on study methods and outcomes measurements [11]. Rosemary oil has been compared to minoxidil for the treatment of androgenetic alopecia, with lower hair counts found in the rosemary oil group, and no placebo group for comparison [12]. Saw palmetto (derived from the Serenoa repens dwarf tree) reportedly demonstrates anti-androgenetic properties and has been used as both a topical and oral supplement for both androgenetic alopecia and telogen effluvium [13], although robust high-quality data are lacking.

Alopecia has a major psychosocial impact, leaving patients desperate for a cure and vulnerable to misinformation. The visible nature of alopecia as well as the image-obsessed world of social media can leave patients desperate for a cure. Multiple false beliefs regarding alopecia are circulating, such as incorrect causes, inaccurate criticism of conventional treatments, and dubious alternative treatments. Limitations of this study included the impossibility of reviewing all misinformation available on the Internet and the review of English language material only, as much misinformation is shared in other languages globally. All healthcare professionals, including dermatologists, should be aware of the dangers of medical misinformation, as well as the breadth of alopecia-related misinformation content available online.

The authors have no conflicts of interest to declare.

No funding was required for this article.

M.M. and C.O.C. conceived of the research idea. P.H. and Y.G. performed the initial literature review and Internet website review. P.H., Y.G., and C.O.C. prepared the figure and table. P.H., Y.G., C.O.C., and M.M. prepared the initial drafts and reviewed the final version.

Paula Finnegan and YiXuan Goh should be considered joint first authors.