How Black Detroiters Experience Hidradenitis Suppurativa (HS)

A DEI mapping project by The Association of Hidradenitis Suppurativa & Inflammatory Diseases (AHSID) created in partnership with Novartis.


Created with strategic support from Voz Advisors, data analysis and design by Sā Creative Playscape, And the generously shared stories of Black detroiters with hs.

Hidradenitis Suppurativa (HS) (pronounced: hih-drah-duh-NY-tis sup-yur-uh-TAY-vuh) is a painful, chronic skin condition that causes recurring, deep nodules and boil-like abscesses. These can appear anywhere on the body where there are hair follicles, but are most commonly found in the groin, armpits, buttocks, chest, back, and/or thighs. These symptoms can severely impact movement, mental, physical, and sexual health, and quality of life.

Though most commonly called HS or Hidradenitis Suppurativa, people across different languages and cultures refer to it in many ways, including Acne Inversa, Klou, Boils, Apocrine Acne, and Verneuil’s Disease. Regardless of the name, the experience is universally challenging and often misunderstood.

Learn more about HS here. 

Many factors shape a person’s journey with Hidradenitis Suppurativa (HS)—from income and heritage/background to diagnosis and access to care. These elements impact treatment quality, healthcare resources, and even mental health — all of which can have implications on the everyday experience of HS.

To uncover these disparities, we conducted a community-driven survey amplifying the voices of marginalized HS communities in Detroit. Whether you're an HS warrior, caregiver, healthcare professional, or advocate, this project provides a powerful visual narrative of the challenges and barriers this community faces. 

This site is best experienced on a laptop, desktop computer or monitor.

Our survey of Black Detroiters with HS was completely anonymous. The images on this page are stock photos that represent the communities we connected with.

How to Navigate this Microsite

This site brings together powerful data, insights, and voices from HS warriors across Detroit and beyond. To help you explore everything clearly, we’ve organized the content into four main sections:

  • an overview with survey questions, methodology & key findings

  • a visual map creatively highlighting Detroiter’s HS Experience

  • an interactive data tool to explore the stories of HS Warriors

  • a deeper dive into the data to better understand the HS experience

  • resources for care, community, & mental health

Each section includes a mix of maps, interactive charts, and visual storytelling, designed to highlight both the lived experiences and systemic challenges faced by the HS community. As you explore, be sure to follow the instructions for each interactive chart to get the most out of the data.

For a list of HS resources, please see the Resource section at the bottom of the site.

Survey Questions & Methodology

To ensure our survey captured a comprehensive view of the HS experience, we asked participants detailed questions covering their demographics, diagnosis journey, healthcare experiences, and access to resources.

The survey explored key aspects including:

  • What zip code respondents live in Detroit

  • Gender, heritage/background, income, and age

  • Type of insurance and access to HS care resources in their neighborhood

  • Diagnosis status, severity (Hurley stage), and provider type

  • Presence of other chronic illnesses or comorbidities

  • Satisfaction with HS care and access to resources

  • Barriers to care as a person of color with HS

  • How respondents educate themselves about HS

  • The mental health impact of HS

  • Clinical trial access and healthcare exclusions

By capturing these insights, we aimed to paint a holistic picture of how social, economic, and systemic factors influence an HS Warrior’s journey.

Key Findings

To ensure our survey captured a comprehensive view of the HS experience, we asked participants detailed questions covering their demographics, diagnosis journey, healthcare experiences, and access to resources.

1. HS Commonly Affects Multiple Areas of the Body

Nearly 60% of respondents reported having HS in multiple locations, most commonly the underarms, followed by the buttocks, inner thighs, and groin. This highlights the widespread and physically painful nature of the condition, requiring comprehensive, body-aware treatment approaches.

2. Hurley Stage II Is the Most Common Diagnosis, But HS Progression Is Clear

Among respondents with an official diagnosis, 46% were in Hurley Stage II, reflecting moderate disease progression. HS is often chronic and progressive, with Stage III cases more common in older age groups and those with longer symptom durations—reinforcing the need for early intervention and long-term care planning.

3. Mental Health Is a Major Barrier to Care—Across All Incomes and Genders

59% of all respondents said mental health affects their ability to seek care, with the highest impact reported by gender-expansive respondents (67%). Interestingly, cis men (57%) reported higher impact than cis women (54%), and the rate was consistent across income levels, showing that mental health barriers are universal, not just financial.

4. Access to Care Varies Sharply by Income and Zip Code

Access to dermatologists and HS specialists increased only slightly with income (10% difference from lowest to highest bracket), but access to HS specialists without clinics doubled between the lowest and highest income groups (34% vs. 63%). Access also varied significantly by zip code, even among neighboring areas—showing how where you live and what you earn directly shapes your treatment options.

5. Many HS Warriors Manage More Than One Health Condition

1 in 5 respondents reported at least one comorbidity, most commonly:

  • Inflammatory & autoimmune conditions

  • Metabolic & endocrine disorders

  • Mental health conditions

  • Diabetes

Comorbidities were more common among those over 40 and those with longer HS symptom durations, pointing to the need for whole-person care that addresses more than just skin.

6. Lower-Income Respondents Rely on Community-Based & At-Home Care

Respondents with lower income were more likely to rely on self-managed remedies, support from family and friends, or community spaces, rather than specialists. This underscores the importance of culturally rooted, accessible resources and care that meets people where they are.

7. Despite 80% Reporting Care Satisfaction, Most Still Face Major Barriers

While 80% of respondents say they’re satisfied with their current care, the majority also reported experiencing at least one major barrier, including:

  • Long wait times

  • Discrimination or provider bias

  • Lack of knowledge about HS on darker skin

  • Inability to find HS specialists

This shows that satisfaction doesn’t mean the system is working—it often means people are making do despite the gaps.

Detroit’s HS Experience: A Community Map 

Detroit is a city with a rich history, strong neighborhoods, and vibrant communities—but not everyone has equal access to healthcare.

Our illustrated Detroit HS Community Map brings the voices of survey respondents to life, sharing their challenges, victories, and hopes. Along different sections of the city you’ll find quotes from respondents. By navigating this map, we invite you to experience the human impact behind the data. After you peruse this community map, we invite you to dig deeper into a microsite featuring key findings about HS Warriors, their demographics, their experience of HS, the care they’re receiving, barriers to accessing care, and an interactive showcase of nearly 1300 individual HS warriors’ stories.

TrouBle viewing this? download the map here.

Interactive Data Tool:
Explore the Stories of Detroit’s Black HS Warriors

Now it’s your turn to explore the data. This interactive tool gives you the power to uncover meaningful patterns, disparities, and lived experiences, revealing the systemic gaps in HS care.

How to Interact with the Data:

Each survey respondent is represented as a bubble. You can customize the visualization using four key functions:

  • GROUP BY – Organize respondents by income, age, gender, provider type, Hurley stage, comorbidities, symptom duration, and more to see who is impacted and how.

  • SHADE BY – Apply a color scale to visually highlight key disparities in income, age, gender, or health conditions, making trends easier to spot.

  • SIZE BY – Adjust bubble sizes based on HS severity, so you can see at a glance how different groups experience symptoms.

  • COMPARE – Transform the data into graphs, selecting different variables to explore how factors like income, provider type, or comorbidities intersect.

Immerse yourself in the individual stories of Michigan’s marginalized HS Warriors.

Click on the individual bubbles to read the full story of each warrior in their own words. Learn how all of the elements we’ve explored merge to create the unique experience of each warrior. By interacting with this tool, you’ll gain deeper insight into the lived experiences behind the numbers — showing not just data points, but real people, real struggles, and real disparities that need to be addressed.

Exploring the Data: Understanding the HS Experience

This microsite provides a comprehensive look at the lived experiences of HS warriors, highlighting the challenges, disparities, and resilience within the community. Through data-driven insights, we explore who we are, our HS journeys, how we receive care, access to treatment, the barriers that stand in the way, and how all of these pieces come to create our individual stories. Each chart and analysis tells a story — one that goes beyond numbers to amplify the voices of those navigating HS every day.

HS Demographics & Community Overview

Understanding the lived experiences of HS warriors starts with understanding who they are.

Through our survey, we gathered key demographic data that provides insight into the diversity of HS warriors in Detroit:

  • Zip Code - Where respondents live within the city of Detroit, in Metro Detroit, and in Michigan at large.

  • Heritage/Background – A breakdown of racial and ethnic backgrounds and heritages among respondents.

  • Gender Identity – Representation across men, women, transgender, and gender-expansive communities.

  • Age Distribution – The distribution of respondents across generations.

  • Income Levels – Financial realities that impact access to healthcare and resources.

These charts offer a foundation for deeper exploration into the disparities that exist within the HS community.

A Closer Look at Detroiters’ Journeys with HS

Hidradenitis Suppurativa (HS) is more than a condition—it’s a deeply personal journey that affects each individual differently. This section explores the lived experiences of survey respondents, including how long they’ve had symptoms, where HS appears on their bodies, Hurley Stage, and any other illnesses they manage alongside HS.

Each data point represents a real person — A Warrior in their own battle of self love, healing, & understanding this debilitating condation — generously helping us gain insight into how HS has physically impacted them over time and where they are in their experience today.

When did hs warriors’ Symptoms begin?

HS is a chronic, often lifelong condition, but many people live with symptoms for years before receiving a diagnosis. What begins as unexplained pain, abscesses, or skin irritation is frequently dismissed, misdiagnosed, or treated as temporary, leading to delays in care.

This section explores how long survey respondents have been living with HS symptoms, offering insight into how symptom duration is shaped by factors like age, gender, Hurley stage, and heritage/background. Because HS often begins in adolescence or early adulthood, symptom duration tends to increase with age, revealing the long-term toll of delayed diagnosis and limited access to care. These findings highlight the urgent need for early recognition, timely intervention, and sustained support to improve outcomes for HS warriors at every stage of their journey.

what exactly is hidradenitis suppurativa (HS)?

Hidradenitis Suppurativa (HS) is a debilitating chronic skin condition that produces painful, recurring, deep-seated, boil-like abscesses that may start as pustules (small, pus-filled bumps) or grow to be the size of a golf ball or larger. These abscesses, nodules, or lesions can be painful and release a foul-smelling pus when they burst, impacting daily movement & quality of life.

HS doesn't only appear in areas where skin touches skin. The disease can develop anywhere hair follicles can be found, but hair growth doesn't have to be present for HS to develop. In fact, HS can be experienced in the groin, buttocks, armpits, chest, back, thighs, torso, head, face, and legs. The only places that HS cannot develop are on the palms of the hands, the soles of the feet, or the red part of the lips.

HS severity levels are typically classified as mild, moderate, or severe. Health care professionals may use The Hurley Stage System of severity outlined below.

What Hurley Stage of severity are warriors experiencing?

Because Hidradenitis Suppurativa (HS) severity varies widely, many providers use The Hurley Staging System to classify the progression of symptoms from mild to moderate to severe. This section breaks down survey respondents by Hurley stage and explores how severity correlates with age, gender, symptom duration, and heritage/background—shedding light on how different groups experience and navigate HS over time.

mild

stage 1

One or multiple isolated abscesses usually without significant scarring or sinus tracts. There can be surface discoloration scarring at stage 1 due to trauma from the abscesses.

moderate

stage 2

Recurrent abscesses, single or multiple widely separated lesions, with scarring and sinus tract formation.

Assigned male at birth

These are the most common areas where cisgender men and people assigned male at birth experience HS flares. For those assigned male at birth, two full-body figures (front and back) are used to show affected areas. The most common locations for HS flares include the inner thighs, genitals, and the area between the buttocks. Additional areas that may be affected include the armpits, stomach, back, and the back of the neck.

severe

stage 3

Diffuse or broad involvement with extensive scarring and multiple interconnected sinus tracts (tunneling) and abscesses.

Where on their bodies Do hs warriors Experience flares?

HS can develop in multiple areas of the body, often in painful, recurring flare-ups that impact daily life. This section examines the most common HS locations among survey respondents and compares how affected areas vary by age, gender, symptom duration, and comorbidities. Below is a diagram highlighting the most frequently reported HS locations that we based our survey questions on.

The diagrams below illustrate the most frequently affected areas based on pre-existing medical research and insights from HS specialists—not from our survey data. However, we wanted to go beyond established knowledge and hear directly from our respondents about their unique experiences with HS. The images below show the areas where HS most appears on Men or people assigned male at birth and women or people assigned female at birth. Many respondents selected multiple areas affected by HS, showing that HS commonly affects more than one location. Our survey options were gender neutral to assess the most commonly affected areas across all respondents.

The image is divided into two sections: one representing individuals assigned male at birth (left) and the other representing individuals assigned female at birth (right). It visually highlights the most common areas for HS flares using a color gradient ranging from light brown (least common) to dark red (most common). Please keep in mind that HS can appear anywhere on the body where there are hair follicles.

Assigned female at birth

These are the most common areas where cisgender women and people assigned female at birth experience HS flares. For those assigned female at birth, a single side-facing, seated figure illustrates flare sites. The most common areas include the inner thighs, groin, labia majora and minora, underarms, and the area between the buttocks. Other frequently affected spots include the bikini line and the area between the breasts.

What Comorbidities are HS Warriors managing?

Many individuals with Hidradenitis Suppurativa (HS) also experience additional health conditions, known as comorbidities, which can complicate treatment and overall well-being. We now know that 19.8% of respondents reported that they face additional health challenges beyond HS. This section offers a detailed analysis of the specific comorbidities impacting the HS community, highlighting:

  • Prevalence of Comorbid Conditions: Focusing on the frequency of inflammatory, autoimmune, metabolic, and chronic pain disorders.

  • Impact on Treatment and Well-being: How these comorbidities influence treatment strategies and quality of life.

  • Insights into Health Challenges: Understanding the broader health landscape to enhance comprehensive care approaches.

By examining these aspects, we aim to underscore the complex interplay between HS and other health issues, emphasizing the importance of a multidisciplinary treatment approach. 

*Please note that because respondents were asked to write out their comorbidities, some diseases mentioned here may fall outside of what is deemed a traditional comorbidity of HS.

How Detroiters are Caring for their HS

Managing HS requires access to knowledgeable providers, effective treatment plans, and sometimes alternative approaches when traditional care falls short. This section explores who is diagnosing HS, where people receive care, and the alternative methods respondents use to manage their condition.

The journey towards diagnosis

For many living with HS, the journey to diagnosis can be long and frustrating, marked by misdiagnosis, dismissal, and years of uncertainty. Below, the charts break down survey respondents’ diagnosis status and the healthcare providers who identified their HS. These insights shed light on how people are being diagnosed, who is recognizing HS, and where gaps in early detection still exist.

Where Are HS Warriors Receiving Care?

For many, receiving a diagnosis is just the first step—accessing consistent, reliable care is an ongoing challenge. HS warriors often navigate a complex healthcare system, seeking treatment from multiple providers to manage their condition.

The charts below highlight where survey respondents currently receive care. Respondents are able to select multiple care sources. 

Alternative Support & Community Resources

For many HS warriors, the traditional healthcare system isn’t enough. When doctors dismiss their pain, when medications fall short, they turn elsewhere. This includes alternative resources — naturopathic centers/holistic clinics and herbalist.

Press play on each chart below to show where survey respondents learn about HS, broken down by gender, age, income, and Hurley Stage.

For a list of Detroit and national HS resources, See the resource section at the bottom of the site.

Accessing Care from Anywhere

This section explores survey respondents’ access to care, including how neighborhood resources vary by zip code, the impact of income on care and resources, the role of health insurance, and overall satisfaction with treatment. By examining these factors, we gain insight into the barriers HS warriors face and the disparities that shape their healthcare experiences.

Access to resources by neighborhood

With this heat map, explore survey respondents’ access to resources by zip code, offering a neighborhood-level view of care and accessibility. Each map displays one of the nine resource categories by zip code. Including: 

  • Dermatologists

  • HS specialists (with or without a clinic)

  • ER/Urgent Care

  • Naturopathic & holistic clinics

  • Self-managed care with at-home remedies

  • Support groups

  • Family & friends as a support system

  • Estheticians

  • Other alternative care options

How Does Income Shape Access to Care & these resources?

Two important data sets to look at in the chart below are income and it’s link to access to care. 

  • Dermatologists are the most common provider across all income levels, but income shows only a weak overall correlation with access.

  • Respondents earning $0–$9.9K reported the lowest access to dermatologist (47%), while those earning $10K–$24.9K reported significantly higher access (60%)—a 13% increase that suggests income may play a more important role at the lowest bracket for this resource.

  • However, beyond this range, access rates fluctuate across income groups, with some higher-income respondents reporting lower access than those in mid-income brackets.

  • In contrast, access to HS specialists with clinics increases consistently with income, showing a clearer disparity in more specialized care.

Support Group Access vs. Use Among the Lowest-Income Respondents

Among respondents earning $0–$9.9K, 21% reported having access to support groups, but only 7.3% reported actually using them for care. This gap suggests that while support groups may be available, they are underutilized by those who might benefit most—possibly due to lack of awareness, trust, relevance, or accessibility barriers.

HS specialists and support groups play a vital role in HS care. See the resource section at the bottom of the site for detroit and national hs resources.

Health insurance factors into care

The charts below display the types of insurance survey respondents have, broken down by income, age, and Hurley Stage. View all insurance types or use the drop-down menu to focus on a specific type.

Care Satisfaction & The Barriers That Impact It

Barriers to Accessing Care

This section explores the key obstacles our HS warrior survey respondents encounter and examines how these barriers vary by gender, age, and income.

How Does Mental Health Affect Seeking Care?

For many, mental health struggles are just as debilitating as physical pain. Overall, 59% of the HS Warrior survey respondents said mental health impacts their ability to access care. These findings emphasize that HS care must go beyond treating symptoms—it must address the mental and emotional toll of the disease.

If you're in need of support, we've compiled a list of mental health resources designed to serve Black and marginalized communities:

  • Erin Martinez – A Michigan-based social worker offering affirming care.

  • The Loveland Foundation – Provides mental health resources and therapy grants for Black women and non-binary people.

  • Therapy for Black Girls – A directory connecting Black women with culturally competent therapists.

  • Therapy for Black Men – A platform offering a safe, stigma-free space for Black men to access therapy and tools for healing.

  • Black Men Heal – A grassroots nonprofit addressing inequities in mental health care for Black and Brown communities through access, advocacy, and healing spaces.

For those with HS, accessing care goes beyond simply making an appointment—it’s about being heard, respected, and treated with dignity. While 80% of respondents reported being satisfied with their care, most still face at least one major systemic barrier that limits access to quality treatment.

Satisfaction with Care

This section examines survey respondents’ satisfaction with their current HS care, analyzing how experiences vary by zip code, gender, income, and Hurley Stage. These insights help highlight who is receiving effective care, where gaps exist, and how different factors influence patient satisfaction.

HS Resources

Mental Health Resources

  • Erin Martinez - a Michigan-based social worker 

  • Loveland Foundation - a nonprofit designed to support Black women and non-binary folk with mental health resources, grants, and other care. 

  • Therapy for Black Girls - a organization providing a direct connection to mental health providers of color 

  • Therapy for Black Men - Therapy for Black Men mission is to provide a safe and stigma-free space for Black men to seek mental health support and empower them with the tools they need

  • Black Men Heal - Black Men Heal is a 501c3 grassroots nonprofit organization, that was established in 2018. It was created as a solution to a broken inequitable mental health care system that does not center the needs of marginalized Black and brown communities.

Patient Stories & Other Resources

Beyond the Numbers

be seen for who you are. not for what you have.

Behind every data point in this survey is a real person—a neighbor, friend, or family member who may have lived in silence for years, struggling with HS without the support they deserve. This survey was about more than just collecting numbers. It was about amplifying the voices of people living with HS, ensuring their needs are recognized, their stories are heard, and their experiences are validated.

By understanding these gaps, we can work towards improving healthcare access, advocating for better resources, and reducing disparities in the HS community. We hope this microsite serves as a tool for change, sparking dialogue, awareness, and action toward a future where no HS warrior is left behind and all HS Warriors are seen for who they are and not for what they have.

For questions about how the survey data was tabulated and analyzed, please contact us at contact@theahsid.org.