These are resources on HS that I have found helpful in my own education. Most of the facts and statistics I use on this page are from these resources.
The HS Foundation – The HS Foundation aims to share the latest research, treatment guidelines, and resources with patients and medical professionals. They advocate for better treatment and HS awareness.
The North American Treatment Guidelines – The first of its kind, this evidence-based clinical treatment guideline for HS aims to summarize and share current diagnosis practice, treatment, and management based on current evidence and practice trends.
The National Organization for Rare Disorders page on Hidradenitis Suppurativa – Although HS is no longer considered to be a rare disease, it once was because only severe cases were reported and it was hard to treat. NORD still offers a helpful review of HS including clear and concise definitions of the Hurley stages.
The Mayo Clinic on Hidradenitis Suppurativa – The Mayo Clinic has an entire site on living with HS. It reviews health information and expert answers. The Mayo Clinic also has information on HS under diseases and conditions. This page covers symptoms, causes, diagnosis, and treatment.
The American Academy of Dermatology on Hidradenitis Suppurativa – The AAD has a page on Hidradenitis Suppurativa that reviews HS from dermatological framework. It covers symptoms, causes, treatment, self-care, and mental health.
Cedars-Sinai on Hidradenitis Suppurativa – Another resource that reviews HS and its causes, diagnosis, symptoms, and treatment.
Healthline: Everything You Should Know about Hidradenitis Suppurativa – Healthline has a lot of recent and easy to read updated articles on living with and managing HS, and other information. These articles tend to reflect recent trends in the HS community. Even if I do not personally follow some of these trends, I like to keep myself updated on them!
Race and Hidradenitis Suppurativa
Race and Ethnicity Gaps in Global Hidradenitis Suppurativa Clinical Trials – By: Price, K.N., Hsiao, J.L., & Shi V.Y. Although the literature generally states that HS is more prevalent among Black people, no studies have evaluated the overall generalizability of clinical trial results. Additionally, data exploring the distribution of race and ethnicity in randomized controlled trials for HS is minimal. This article concludes that more emphasis should be placed on disease prevalence in different demographics in clinical trials, especially since there is a significant gap in representation of Black people in these studies. Further studies could lead to more accurate treatment and improve outcomes.
The Burden of Hidradenitis Suppurativa Among Patients With Skin of Color – By: Shi, Vivian. This article in The Dermatologist reviews the limited treatment options available and lack of research on how HS affects patients with skin of color, which has left many patients struggling to receive the appropriate care they need to improve their quality of life.
Hidradenitis Suppurativa Disproportionately Affects African Americans: A Single-center Retrospective Analysis – By: Vlassova, Natalia; Kuhn, Diane; & Okoye, Ginette A. The authors of this study sought to review the frequency of HS of this institution and determine the differences in frequency between men & women and African-Americans & Caucasians. This review was for one institution specifically. The results of this study suggest a higher prevalence of this debilitating disorder in African-Americans, in particular African-American women.
Skin Issues that Affect Patients with Skin of Color – By: Espinosa, Mara and Lio, Peter. Since healthcare disparities in dermatology and other fields of medicine, the authors of this article seek to address these disparities by outlining the differences in epidemiology, presentation, access and outcomes of five conditions in patients with skin of color, including Hidradenitis Suppurativa.
A Holistic Approach to Hidradenitis Suppurativa Treatment in Skin of Color – By: Edita Newton, a review of a presentation by Dr. Ginette Okoye. Hidradenitis suppurativa disproportionately affects patients with skin of color. It is suggested that African Americans are 2-3 times more likely to be affected. HS should be treated with a multidisciplinary approach.
Research on mental health and HS
Pain, Psychological Comorbidities, Disability and Impaired Qualify of Life in Hidradenitis Suppurativa – By: Patel, Zarine S., et al. This article is a review of the relationship of pain from HS and other psychological comorbidities, including depression, anxiety, disability, and impairments in quality of life. The authors review existing literature and conclude that pain, depression, anxiety, and disability all contribute to poor quality of life in individuals with HS. Unfortunately, there are few studies that evaluate the impact of pain and HS.
The Psychosocial Impact of Hidradenitis Suppurativa – By: Onikoyi, Omobola, et al. This article in The Dermatologist discusses the quality of life of patients with HS and feelings of low self-worth and depression. The authors encourage mental health screenings and online support.
Perspectives On Perceived Stigma And Self-Stigma In Patients With Hidradenitis Suppurativa – By: Koumaki, Dimitra, et al. This article is a review of literature on stigma, self-stigma, and HS/acne inversa. The authors conclude that “stigma is a significant contributor to the impairment of quality of life and psychiatric co-morbidities commonly seen in patients with HS” and should therefore be treated through a multidisciplinary approach.
A qualitative analysis of psychological distress in hidradenitis suppurativa – By: Keary, E., Hevey, D. & Tobin, A.M. A small study on the lived experiences of people with HS and psychological distress. With exsiting literature, the study concludes feelings of shame and depression need to be considered with the physical pain of HS.
Research on pain and HS
Pain perception in patients with hidradenitis suppurativa – By: Nielsen, R.M., et al. This study shows that HS pain is both nociceptive and neuropathic which means that HS causes acute pain and chronic pain. Therefore, a multimodal pain management strategy may be the most appropriate for treating HS pain. The most common descriptors for HS pain were: shooting, itchy, and blinding.
Q&A: Pain Perception In HS – An interview in The Dermatologists of the authors of the study above. These authors highlight the need for more studies on pain associated with HS and that pain should be considered in HS treatment.
Pain in Hidradenitis Suppurativa: A Pilot Study – By: Ring, Hans C., et al. The authors of this article report that the mean Dermatology Life Quality Index (DLQI) scores for patients with HS were higher than reported for other skin diseases during their research. One of the highest scores in this index was from HS related pain, emphasizing the importance of pain treatment. The authors of this article discuss the possibility that physicians may prioritize treating skin symptoms of HS while under prioritizing pain management, Therefore, HS treatment should be done in collaboration with a pain specialist to address pain issues.
Pain Management in Patients With Hidradenitis Suppurativa Requiring Surgery – By: Puza, Charles J.; Wolfe, Sarah A. & Jaleel, Tarannum MD. I am sharing this article just for this quote: “Despite being one of the most painful conditions treated by dermatologists, hidradenitis suppurativa lacks an accepted pain treatment algorithm… Proposed therapies for HS included common medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), tricyclic antidepressants, selective serotonin and/or norepinephrine reuptake inhibitors, antiepileptic, and topical analgesics.”