Why are there so many terms for our illness, like sinus tracts, boil-like, pustules, and nodules, etc.?

Let’s dive into the language that is commonly used with HS to help you navigate your journey.

All of these terms below are acceptable and accurate in describing Hidradenitis Suppurativa:

Abscesses, lesions, or boil-like - typically describing HS that is elevated and on top of the skin.

Nodules, lumps, and bumps - usually beneath the skin.
DEPs - Blackhead-like - the technical term for them is double-ended pseudocomedones, or sometimes called double-ended comedones.

Pustules - small, inflamed sores filled with pus.
Wounds - can occur after an HS abscess drains. These can be acute or chronic.

Skin tunnels, tunneling, and sinus tracts - channels that go from the skin to deeper tissue.

Fistulas - an abnormal connection between two epithelial surfaces. May happen as a result of severe skin tunneling,

Scar Tissue, Roped Scaring, Hypertrophic Scarring, Fibrotic, and Keloid Scars - in a pathological process, normal tissue is replaced by connective tissue, leading to the formation of permanent scar tissue.

The terms below do not accurately describe Hidradenitis Suppurativa:

Boils

Cysts

Acne

Folliculitis

I get why it can be confusing, and it’s totally understandable. If everyone agreed on terminology worldwide, it would be less confusing for everyone, including those in the medical field and researchers. 

Together, we have the power and numbers to make a difference in raising awareness about HS. We must keep up with those efforts. 

_{I will go into some of these topics more thoroughly in the future in my articles (will be tagged to this section). Including tips on how to better manage.}

_{Special Note: Researched, compiled, and written by Denise Fixsen. This information is backed by my 46 years of living with Hidradenitis Suppurativa, 10 years of dealing with multiple chronic illnesses, 36 years of advocacy, and continuous education. And to ensure accuracy, reliability, and trustworthiness, I incorporate peer-reviewed studies and other high-quality sources into my articles and material. I also wanted to inform you that I’ve chosen to end my collaboration with editors on my articles. Although there may be grammar errors due to brain illnesses (mostly), with this said, my content remains reliable, factual, and solid.}

_{Medical Disclaimer: This content is solely for information, education, and support. The purpose is not to serve as a replacement for professional medical advice, diagnosis, or treatments.}

_{Sources: PMC7450471PMID: 32884675 doi:10.1001/jamadermatol.2017.0904 doi.10.1016/j.clindermatol.2023.08.021PMC8537933PMID: 34696185doi: 10.1007/s00590-019-02432-4doi: 10.1001/jamadermatol.2017.5978 DOI: 10.3810/pgm.1999.10.1.730 doi.org/10.1159/000529848 doi.org/10.1016/j.ijscr.2022.107196}

_{FAQ posted on 09-01-2024}