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 one in five 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.
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.
More information
Arsema K Zadu et al, The Role of TikTok in Education on Hidradenitis Suppurativa in Skin of Color: Cross-Sectional Analysis, JMIR Dermatology (2026). DOI: 10.2196/71566
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JMIR Publications
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