Patient Voice Published by British Journal of Dermatology
In late 2018, I joined five other passionate patient advocates that are admins for Facebook groups representing over 25,000 hidradenitis suppurativa patient voices in a community engagement event hosted by University of Southern California San Francisco and Facebook. We spent eight exhausting hours confronting the bleak reality of navigating the American healthcare system as someone living with hidradenitis suppurativa. Nothing short of brutal honesty was displayed as we relayed the struggles of our communities: coping with pain on our own, difficulty finding a knowledgeable provider, lack of effective treatment options, mental health consequences, the often-times blaming, shaming, or dehumanizing experience of an HS clinic visit, and the erosion of trust between patients and the medical community that results from all of these difficulties.
The doctors and researchers from University of California San Francisco, Palo Alto Medical Foundation Research Institute, Stanford School of Medicine, The Rockefeller University, and the Hidradenitis Suppurativa Foundation listened with open minds and hearts, clearly demonstrating their genuine desire to collaborate with patients toward a common goal of repairing a system that isn’t meeting the needs of so many people living with hidradenitis suppurativa.
The results are a concise, distilled description of the cycle of HS health care and the consequences that have led us to the situation that direly needs improvement. With its publication accepted in the British Journal of Dermatology, great hope is instilled within our communities – so many practitioners and researchers are not aware of the truth of the situation, and so often our voices as patients go unheard. But the combined voices of over 25,000 patients and experts in the hidradenitis suppurativa field has been recognized for its truly tremendous value. It is our sincere hope that this publication can inform the well-meaning doctors that we want to trust again and be a bridge toward meeting the needs of patients that are desperate for relief and more effective treatment options.
Usually publications in major research journals like the British Journal of Dermatology require a paid subscription to view. But because the contribution of so many HS patients has gone into this paper, they have recognized the importance of access for everyone. Follow this link to view the publication in its entirety, including some illuminating quotations that every HS patient can relate to.
Please share this post and this publication far and wide! Let every patient be buoyed by the good news that we are being heard, our voices are being amplified by the people capable of making a difference, and things are finally changing.