We are Not a Rare Breed

Updated: Jun 30

HS is NOT rare.

HS is rarely diagnosed (thankfully, this is changing).

HS is rarely diagnosed properly (this too is getting better).

HS is not a disease that all doctors encounter, but the disease itself is not rare.

HS is a global disease affecting millions of people. It was once thought to be a rare disease, however, it is widely accepted* that HS affects an estimated 4% of the global population (based on reported cases). There are millions of people, just like us, living with HS. These percentages and numbers do not include unreported, wrongly reported (this does happen), misdiagnosed cases, and those who do not see a doctor for their disease. It would not be surprising if that percentage was closer to 7 or 8% globally. *based on peer reviewed medical journals

When we talk about HS and the estimated 4% of the population we are typically talking about the United States, the UK, or "first and second world countries". The poor and non-industrialized countries have weaknesses in areas including nutrition, education, literacy and healthcare, as well as economic vulnerabilities and widespread poverty and are most likely not included in the 4% global population. These estimates are based on small study populations sourced from reported medical claims analysis, retrospective chart reviews, and patient questionnaires. Large standardized population-based studies have not been performed, thus, the true overall prevalence of HS is unknown.

The reasons we need to end the stigma that HS is rare:

  • The more “rare” doctors think that HS is the more misdiagnosis occur

  • We need to ensure there is a market for clinical trials to take place

  • Better access to resources as the disease is more well known

  • Best scientists and funding for research

The more people think HS is rare, the more isolated they feel and become, less likely to seek medical attention and the less likely they are to speak out and advocate for HS and awareness.

HS does not discriminate, so our awareness revolving around it shouldn’t discriminate either. ️

This is an awareness article for educational purposes only and is not intended to replace the advice of your doctor or other health care provider.


Written by Denise Panter-Fixsen

Edited by Brindley Kons

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