How do historical and systemic issues limit research on lichen sclerosus in women of color?

Historical and systemic issues shape how lichen sclerosus is studied and diagnosed in women of color, and the context you shared helps paint a clear picture of why this happens.

Dr. Sameena Rahman talks about this in her conversation on vulvar conditions. She explains that most of the medical images and training materials used to teach clinicians what lichen sclerosus looks like are based on white skin. When the condition presents on darker skin, the classic signs, like hypopigmentation, can look very different. Because of that, women of color are more often misdiagnosed or told they have something else, like vitiligo. If you want to hear her describe this directly, you can watch her explanation in this video chapter on lichen sclerosus and underdiagnosis in women of color: Introduction to Lichen Sclerosus.

She also points out that women of color have been historically excluded from research, both because of systemic bias in recruitment and because there has been little effort to build trust with communities that have every reason to feel skeptical of medical research given our country's history. That means there is less data, fewer images, and fewer clinical trials that include them. The result is a cycle where conditions like lichen sclerosus stay understudied, misdiagnosed, and undertreated.

Here at Alloy, we talk often about how these gaps in research affect women of color in menopause too. Dr. Sharon Malone has shared that only a tiny fraction of federal research funding goes toward women, and an even smaller sliver toward women of color. When research leaves out diverse populations, clinicians are left with incomplete information, which affects diagnosis and treatment across the board.

If you're curious about how broader systemic inequities affect care for women of color, you might also find our Juneteenth webinar helpful. Dr. Malone and Dr. Jayne Morgan discuss how historical bias shapes everything from clinical trials to everyday medical visits. You can watch the conversation here: Menopause disparities and Black women.

This answer was created using the following resources:

• Lichen Sclerosis: An Underdiagnosed Condition in Women of Color | Dr. Sameena Rahman

• Sex, Menopause & Cultural Differences | Dr. Sameena Rahman - Lichen Sclerosus & Underdiagnosis in Women of Color

• Treating Lichen Sclerosis and Hormonal Changes | Dr. Rachel Rubin - Understanding Lichen Sclerosus

• Optimizing Vaginal Health Through Menopause | Dr. Rachel Rubin - Lichen Sclerosus & Vulvar Conditions

• Menopause Disparities & Black Women | Alloy

• Menopause is Different for Black Women | Alloy