How much do we really know about Hidradenitis Suppurativa (HS)? The answer is complicated. Despite being a common condition, there are gaps in the data due to misdiagnoses, underreporting, and limited research. Let’s break down what we know—and what remains uncertain.
Common Myths About HS
Which of the following is true?
- HS most commonly occurs in women aged 22–40.
- It’s rare for HS to occur before puberty.
- It’s rare for HS to occur after menopause.
- None of the above.
Answer: None of the above.
While these statements are widely circulated, they oversimplify a complex condition. HS doesn’t adhere to strict age or gender boundaries. In fact, individuals can develop HS before puberty, after menopause, or at any other stage of life.
Age, Gender, and HS: What the Data Tells Us
The age groups most often associated with HS typically refer to when people are diagnosed, not when symptoms first appear. This distinction is important because many people live with HS for years before receiving an accurate diagnosis. Reasons for this include:
- Delays in seeking care: People may not recognize their symptoms as serious or may not seek medical attention until their condition worsens.
- Misdiagnoses: HS is often mistaken for boils, infections, or acne, leading to further delays in proper treatment.
HS can impact anyone. It does not follow age or gender guidelines. While many people are diagnosed in their 20s and 30s, that may reflect when they finally received a diagnosis, not necessarily when symptoms began. HS can appear at any time or stage of life.
Why Does It Seem Like HS Affects Women More?
Several factors may explain why women appear to be more commonly diagnosed with HS:
- Healthcare-Seeking Behavior: Women are statistically more likely to visit a doctor for medical issues, including HS.
- Communication: Women are often more vocal about their experiences with HS, both in personal networks and public forums.
- Bias in Data: Many studies are based on populations where women are more likely to participate or report their symptoms.
Conversely, men and certain ethnic groups may be less likely to seek care or discuss their symptoms, leading to underrepresentation in data (read more about HS in males here). Misdiagnoses and cultural stigma further compound this issue, making it challenging to draw definitive conclusions about gender and ethnic prevalence.
The Truth About HS Statistics
For years, our understanding of hidradenitis suppurativa (HS) prevalence has been limited by small, localized studies and patient self-reported data. These fragmented data sources have made it difficult to determine how many people worldwide are truly affected by HS.
The first Global Hidradenitis Suppurativa Atlas (GHiSA) study represents an important step toward addressing these gaps. By working to collect more standardized and internationally representative data, GHiSA aims to better understand the true global burden of HS.
Questions that have long remained unclear — such as whether HS affects men or women more frequently, how ethnicity and access to care influence diagnosis rates, and how HS presents across different age groups — require large-scale global data to answer accurately. Children and older adults, in particular, have often been underrepresented in previous research.
The GHiSA initiative is helping move the field beyond rough estimates toward a clearer, more globally informed picture of HS.
Why Your Participation Matters
Every time you participate in an HS study or survey, you contribute to a clearer understanding of this condition. Better data means:
- Improved diagnosis rates
- Increased research funding
- More inclusive treatment options
Without accurate statistics, many people living with HS remain invisible in the data—and untreated in the healthcare system.
Final Thoughts
When it comes to HS, there’s still much we don’t know. However, by staying informed, participating in research, and advocating for better awareness, we can help close the gaps in understanding.
Remember: the more data we collect, the closer we come to ensuring that every person affected by HS is seen, heard, and cared for.
Let’s work together to dispel the myths and bring the realities of HS into the spotlight.
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