Before establishing ourselves as a non-profit organization, The Association of Hidradenitis Suppurativa and Inflammatory Diseases, under our former title My Gold Lining, Inc., produced three successful patient-led educational virtual summits amassing 1,000+ registrations, 1.2K+ viewers on YouTube, and $7,000+ in funding and corporate sponsorships. In 2019 we created a documentary on HS, My Gold Lining: A Documentary on Hidradenitis Suppurativa, elevating the stories of Black women with HS to help raise awareness for marginalized bodies. It can take more than seven years for a person with HS to receive a diagnosis. One of the many reasons is despite HS being around for quite some time, much of the medical community is uneducated in identifying, let alone treating or managing, the disease. Because of this, this community and people living with HS in marginalized groups are at an even greater risk of facing disparity. As medical professionals are playing catch up, people are suffering greatly. Many don’t fully understand their options, what resources to use, what is happening to their bodies, or what is fact from fiction, which only increases the gaps previously mentioned in care. The HS community needs educated medical professionals who can create effective treatment options and provide adequate wound care and pain management tools.
