The stigma of alopecia – explained by a dermatologist with the condition

Hair & nails

By Sunalie Silva

10 Mar 2021

Dr Carolyn Goh

A dermatologist diagnosed with alopecia has spoken out about the stigma and bullying she and many others with the condition face about their hair loss.

The personal account of US specialist Dr Carolyn Goh’s experience living with the condition comes in response to new study findings published in JAMA Dermatology revealing just how substantial public stigmatisation of the condition is.

Researchers in the US surveyed more than 2000 people about their opinions on six computer generated images of people and three versions of each—one with average hair, one with scalp hair loss, and one with complete hair loss — with images representing both women and men and different ethnicities.

Most respondents had either never heard of alopecia or had heard of the condition but were unfamiliar with it.

For all portrait categories, negative stereotype and a desire for social distance increased as alopecia severity increased.

Patients with the most severe hair loss were thought to be sick (29.8%), not attractive (27.2%), contagious (9.9%), unintelligent (3.9%), and dirty (3.9%).

And the degree of increase in stigma from the original version to the complete hair loss version depended on the race and sex of the individual pictured, say researchers. The adjusted absolute change on the social distance scale was 0.2 for all race and sex categories except the Black man, which was 0.5 (95% CI, 0.3- 0.7; P = .04).

Writing in a linked editorial Dr Goh, associate clinical professor of dermatology at the David Geffen School of Medicine at UCLA, reveals that, as someone who has been diagnosed with the condition herself, the findings are both welcome and unwelcome.

While the study validates her own experiences of bullying and stigmatisation growing up with the condition, it has also confirmed her worst fears.

“That, because of my alopecia, I may be perceived by others as unattractive, may be devalued as an individual, and am not fully accepted by society.”

The dermatologist, who specialises in treating hair loss, has lived with alopecia for nearly 40 years. Though she wore wigs as a child, Dr Goh says as an adult she chooses not to treat or conceal the condition.

“As an adult, I have been mistaken for male, asked numerous times if I am undergoing chemotherapy, and have even been taunted by those who incorrectly assumed I shaved my head.

When wearing wigs as a child, I experienced bullying and lived in fear of the wig being misplaced or falling off my head.”

Her experience is not unique, she says, noting that similar recollections have been reported by many others, highlighting the pervasive nature of the stigma associated with alopecia – from self stigma to public stigma.

While most skin diseases are potentially stigmatising because they are so visible, Dr Goh points out that many skin conditions, particularly hair loss, are often deemed cosmetic, which can lead to undertreatment by clinicians, lack of government reimbursement, and substantial psychological and financial burdens for those affected.

The study comes at an important juncture in the treatment of alopecia given that Janus kinase (JAK) inhibitors appear to be highly effective treatments, with several in the pipeline undergoing clinical trials.

On fast-track status, the first alopecia areata treatments approved by the US Food and Drug Administration should be available in the coming years, notes Dr Goh discussing the clinicians role in ensuring access to the therapy.

“Understanding that alopecia areata and all types of hair loss are medical diseases with complex implications for the affected person’s life is integral to ensuring access to these treatments …

“As physicians, we can play an integral role in mitigating stigma for patients with alopecia by better understanding their experiences and the social context of the disease, while using non stigmatising language and offering medical therapies, education, and resources for support.”

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