Patient Voice Published by British Journal of Dermatology
Barriers to care and unmet needs are some of the most important topics hidradenitis suppurativa patients discuss with one another at our support group meetings and within our online community.
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.
Rita Johnson
I have HS. I have had it for 25 years . I have had 67 surgeries total so far . It’s one of the worst things I have ever gone through in my life .
Gannon Butler
I’m 21 and I’ve had HS for about 5 years now along side having Eczema my whole life the condition has made me super insecure about myself being so young and coming from a family of low class I don’t have insurance so I can’t get treatment. Has anyone found anything OTC to help treat this Condition?
Teona Jackson
I have had HS for over 20 years, I have had over 30 surgeries and 5 skin grafts, and in a few of those surgeries I was put on a woundvac machine. I remember in the 1990s there was no name for HS, it was call boils, and abscess. I have 3 children and over the years I have been told so many reasons to why I have this condition. A few years back when Humaira was FDA approved for HS, my dermatologist said that I was a candidate for the shots. Well I began the shots and it ended me in the hospital for whatever reason. Right now as I type, I have several HS growing in several areas on my body. I am taking my antibiotics, I lay on my side because it is to painful to sit on my behind. I started out with just the HS as my medical issue, and now years down the road I have RA, and blood pressure. Not to mention now I get pimples that grow pretty big, I have had a biopsy done and it is not part of the HS the dermatologist don’t know what it is. Also when I have so many HS growing on me at once it causes my white count to go up and we are not even going to talk about the pain of the HS, and I end up needing to go to the hospital for my white count and pain. The hospital ends up needing to put me on vancomycin IV. This condition has stopped me in a lot of things that I would like to do and things I have not done. I would love to be part in a organization that support people like me, no one can truly understand this condition unless they are going through it.