Examining the Experiences of Black people with Alopecia

Presenter(s)

Spencer Annor-Ampofo

Abstract or Description

The most common form of alopecia (hair loss) affecting Black people is scarring alopecia, or central centrifugal cicatricial alopecia (CCCA). This condition is linked not only to genetics but also to the unique texture of Black hair and practices often used to maintain it Although scarring alopecia is highly prevalent among Black people, they represent less than 10% of participants in alopecia or hair loss research studies. This underrepresentation extends beyond clinical trial treatments and is also evident in research that seeks to understand the lived experiences of Black people with hair loss or alopecia.

This research study, "Examining the experiences of Black people with alopecia/hair loss," addresses the lack of research on Black people’s perceptions or and experiences with hair loss. This study focused on three aspects of hair among Black people: perceptions of hair, experiences with hair loss, and available treatment options. Eighty-five Black people participated in a survey on hair loss status. Out of the 85 respondents, 39 participants reported hair loss. Regardless of hair loss status, most Black participants valued hair as an essential aspect in their own social and personal identity and culture. For hair loss participants, many sought community resources and social media as remedies or treatment for hair loss versus less than 5% that had consulted a medical professional, such as a dermatologist. Black hair loss participants' experiences and pursuit routes for alopecia treatments expressed in the survey and interviews highlight the necessity for future community outreach in Black and African diaspora communities for research and dermatology.