1. Caro, Sarah R. PhD, RN, CNE


Psychological and other effects of hair loss from this condition should not be minimized.


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A lopecia areata describes a form of hair loss that is unpredictable, has no cure, and may affect as many as 6.8 million people in the United States at some point in their lives. This autoimmune disorder in which the body attacks its own hair follicles has a significant psychological impact, negatively influencing self-concept and coping and involving feelings of loss and hopelessness. Those who suffer from this condition can lose hair on the scalp, eyebrows, or elsewhere on the body; the condition may be temporary or persistent, return after a period of remission, and often afflicts otherwise healthy people. Last year at the Oscars, actress Jada Pinkett Smith, a beautiful, brave, and strong woman, sat with her family while her alopecia diagnosis was the subject of a joke by presenter Chris Rock. Unfortunately, the media response to this exchange focused mostly on the dramatic interaction between the two men that followed. Lost in the fray was the lack of compassion routinely experienced by people living with alopecia areata. A 12-year-old girl from Indiana, Rio Allred, died by suicide last year because, according to her mother, she had been tormented and bullied at school about the baldness resulting from her alopecia areata. These recent events have raised this disorder to national prominence and there is a growing awareness of the lack of compassion and understanding experienced by people living with it.

Figure. Sarah R. Car... - Click to enlarge in new windowFigure. Sarah R. Caro

I am a nurse who has worked for decades with people who have this autoimmune disorder, and I have also watched a close family member learn to live and ultimately thrive with alopecia areata. I am also a legislative liaison for the National Alopecia Areata Foundation, and recently completed a qualitative study about the lived experience of people with alopecia areata that revealed the extent of the trauma, loss, and physical and emotional suffering associated with the disorder. The findings of this study highlighted five major themes: coping with a life-changing diagnosis, finding my own support, navigating through a never-ending journey, accepting the unmanageable, and disconnecting with health care providers. Alopecia areata causes significant emotional pain, psychological distress, and physical discomfort.


The narrative surrounding alopecia areata must change. It is often said about hair loss induced by alopecia areata that "it is just hair." While some patients may come to agree with this statement, hair is often closely tied to core issues of personal identity. It is not "just hair" until those living with alopecia areata decide that for themselves. Patients, family members, and loved ones of persons with alopecia areata often report emotional trauma from its impact. Minimization by providers and others of the potential impacts of hair loss can undermine effective coping and is often perceived by patients as insensitive and lacking in compassion.


In addition, this underplaying of the impact of hair loss on health and functioning has led to a lack of adequate physical and emotional resources for this patient population. For example, most insurance companies do not pay for cranial prosthetics (wigs) for alopecia areata patients but will reimburse for cranial prosthetics for other disease-related hair loss such as that caused by chemotherapy. The individuals with alopecia areata are viewed as healthy except for their hair loss, but hair is an extension of the integumentary system and is essential to health, identity, and body image.


Current events provide an opportunity to call attention to this issue. The dismissive and mocking cruelty toward people with alopecia areata must change to active love, compassion, and support. If you or someone you love has been diagnosed with alopecia in the form of alopecia areata, alopecia totalis, or alopecia universalis, please contact the National Alopecia Areata Foundation ( The foundation offers the latest research findings, support groups, awareness events, and education. This is an ideal moment to educate nurses and the community on this condition.