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What is Hidradenitis Suppurativa?
When the name of the disease isn’t even accurate, it can lead to a lot of misinformation about what Hidradenitis Suppurativa is and what it’s not! In this blog post I am to simply explain what hidradenitis suppurativa is and what it is not so that you can better understand your condition and more effectively communicate with your doctors, family, friends, etc.
HS Basics
High-drah-den-i-tis Sue-purr-ah-tiva – hidradenitis suppurativa. That’s how you pronounce it, although many folks in the community just call it HS for short. HS is an auto-inflammatory skin condition, it’s not an autoimmune disease, or it’s not categorized as one yet. There is no specific HS antibody, and it’s our innate immune system, not our adaptive immune system which attacks our hair follicle.
Auto-Inflammatory Skin Condition
Hidradenitis Suppurativa is an auto-inflammatory skin condition characterized by boil-like abscesses which can appear anywhere on the skin there is a hair. follicle. The abscesses can ben small or large, and fill with fluid, blood, and pus. Hidradenitis Suppurativa can be very painful, no matter the size of the flare of the stage of the disease. Common areas for HS to manifest include under the arms, breasts, inner thighs, groin and buttocks. However, HS can appear anywhere on the body there is hair! Face, scalp, neck, abdomen, etc!
For some people flares will look like hard, painful lumps that appear under the skin and never drain. For others, there is constant draining, and when the flares drain or bust, there will be a puncture wound left which will weep fluid. In stage 2, hidradenitis suppurativa can appear in clusters, with several flares active in one area or all over the body. In stage 3 there are deep wounds, and tunneling which forms. The three stages of HS are measured in the Hurley Stages.
What HS is NOT
There is a lot of misinformation that spreads about hidradenitis suppurativa. Even by well-meaning folks, in forums, and on social media. So let’s clear up the confusion!
- Hidradenitis Suppurativa is NOT contagious.
- It’s not an infection, although infections can occur to active flares.
- HS is not caused by your body size, lack of hygiene, smoking, your diet or parasites – even if these things can impact symptoms, they don’t cause it!
- HS is not your fault!
- HS is NOT curable, remission (meaning symptoms can be well managed or dormant) is possible, but that’s not cured.
- HS is not always progressive, meaning some people can stay stage 1 forever, this is also why seeking treatment early on is key!
- HS is NOT rare! Studies now show that HS affects a significant portion of the population, with estimates ranging from 1% to 4% in some regions.
Let’s Be HS Besties
A huge part of the struggle with Hidradenitis Suppurativa is the isolation. We often feel alone without support. I know that 13 year old Cris, thought she was the only person ever to deal with this disease. Little did I know that there was a whole world of HS warriors out there. It’s important to reach out and find support. Check out the resources I have right here or tap into some of the amazing Orgs!