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Where Are the Doctors? Patients Leading the Conversation on TikTok About Hidradenitis Suppurativa in Skin of Color

On March 2, 2026
Tagged dermatology, digital health communication, hidradenitis suppurativa, skin of color, social media, TikTok health education
Image of a woman doing her beauty routine in front of a phone

Source: Freepik; Credit: Freepik; CCBY


A new analysis reveals most TikTok content about hidradenitis suppurativa in skin of color is created by patients, while little content is created with physician involvement.

(Toronto, March 2, 2026) A new study published in JMIR Dermatology shows that TikTok has become a major source of education and support for people with skin of color living with hidradenitis suppurativa—a chronic, painful inflammatory skin disease that disproportionately affects people of color.

Characterized by painful lumps, abscesses, and scarring, hidradenitis suppurativa is frequently misdiagnosed or caught late. As a result, many patients are bypassing traditional channels and turning to social media for the education and community support they struggle to find elsewhere.

The study, “The Role of TikTok in Education on Hidradenitis Suppurativa in Skin of Color: Cross-Sectional Analysis,” highlights a significant divide: while TikTok is a major source of support, most content is from patients rather than health care professionals.

The researchers reviewed 50 TikTok videos focused on hidradenitis suppurativa in Black skin; they found that nearly half were created by patients sharing lifestyle tips, treatment journeys, and education. Physicians made up a much smaller portion of creators, with dermatologists appearing in only about 1 in 5 videos. When doctors did post content, they mainly focused on explaining treatments and medical procedures. Commercial content was limited and largely driven by patients or product owners rather than clinicians.

This pattern points to a content gap—with personal stories dominating public conversation, while expert medical guidance remains underrepresented.

The study suggests that greater physician involvement on TikTok could help bridge the gap between lived experience and evidence-based care. By engaging openly with patients, dermatologists could address the safety and effectiveness of both medical treatments and popular home or herbal remedies frequently discussed online. Researchers note that acknowledging what patients already use—while offering clear medical guidance—may help build trust and reduce the risk of harmful or ineffective treatments.

Published by JMIR Publications in JMIR Dermatology, the study underscores how social media is increasingly influencing health education and calls for more medical voices to join these digital conversations to better support patients navigating chronic conditions like hidradenitis suppurativa.


Original article: Zadu A, Young J, Seltzer J, Byrd A, Frey C. The Role of TikTok in Education on Hidradenitis Suppurativa in Skin of Color: Cross-Sectional Analysis. JMIR Dermatol 2026;9:e71566

URL: https://derma.jmir.org/2026/1/e71566

DOI: 10.2196/71566


About JMIR Publications

JMIR Publications is a leading independent open access publisher of digital health research and a champion of open science. With a focus on author advocacy and research amplification, JMIR Publications partners with researchers to advance their careers and maximize the impact of their work. As a technology organization with publishing at its core, we provide innovative tools and resources that go beyond traditional publishing, supporting researchers at every step of the dissemination process. Our portfolio features a range of peer-reviewed journals, including the renowned Journal of Medical Internet Research.

To learn more about JMIR Publications, please visit jmirpublications.com or connect with us via X, LinkedIn, YouTube, Facebook, and Instagram.

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Media contact: communications@jmir.org

The content of this communication is licensed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, published by JMIR Publications, is properly cited.

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