HS is not anyone’s fault

Once you understand the science underlying what causes HS, you’ll see how HS is not your fault. There is a growing amount of research on HS, and it is helping us better understand it and how to treat it.

Inflammation, not infection

HS is caused by the immune system generating too much inflammation. HS isn’t exactly an “autoimmune disease,” but it is caused by over-activity of the immune system, which causes inflammation. Inflammation in the skin causes the mix of redness, swelling, itching, pain, sores, and drainage. People with HS also have systemic inflammation that can cause joint pain or fatigue, so it’s important to take care of your whole self by working with a primary care provider.

While we still need to learn more about HS, there are many things our research has uncovered:

  • Your immune system is designed to be quiet and almost inactive when things are going fine. It is also designed to be on the lookout for threats and when something like bacteria starts to cause trouble, then the immune system’s cells and proteins get busy. After the problem is dealt with the immune system quiets down again.
  • For people with HS, their immune system is over-active, not defective. Sometimes people with HS think their immune system is under-active because they get what look like infections, but the HS lesions are inflammation, not infection. Your immune system is overactive and causing inflammation that has too many of the cells and proteins that usually fight infection. The immune system doesn’t shut off when it should, causing lesions that last for a long time or keep coming and going.
  • Part of what causes HS is our genetics. Our genetics control the way our skin and immune system cells work. So, this is why HS can run in a family, but it’s not a guarantee that you will pass it on to any of your kids. The research says that for every three people with HS, one of them will have a family member with HS.
  • HS can be influenced by things we are exposed to, like smoking tobacco or friction, but these aren’t the only reasons why HS happens. We know that if you stop smoking tobacco then you decrease your risk of heart disease, stroke, and lung problems, but it’s not a guarantee that your HS will get better. The same is true for body weight. Research shows that if people are overweight and lose some weight, they will have better overall health, but it is not a guarantee that their HS will get better. 
  • Bacteria are found on the skin of everyone, but for people with HS the skin cells overreact and cause inflammation. The inflammation causes the skin cells to stick to the inside of the hair follicle.
  • It is the hair follicle, not the apocrine sweat glands; inflammation in the hair follicle skin cells causes them to block the opening. The skin cells build up and cause the hair follicle to get wider and weaker. The hair follicles may break open under the skin (rupture) and trigger even more massive skin inflammation, which may produce purulent discharge.

Knowing what causes HS is a big step toward treating it.

Misconceptions and Myths of HS

We know more about HS than ever before and want to set the record straight on some of the existing myths:

You can’t spread HS from one place to another on your body. You also can’t spread it from one person to another (for example it isn’t spread by sharing a washcloth or towel, from touching the drainage, or touching the lesions).

Because HS lesions can happen on the genitals and buttocks, people may mistake it for an STI. But we know HS isn’t an infection, it’s not contagious, you didn’t catch it from someone, and you can’t give it to anyone else.

HS lesions can hold bacteria, but this doesn’t mean it’s an infection. Bacteria live on our skin all the time. When an HS lesion pops up, the bacteria take advantage of the situation and move in, causing more inflammation.  

HS is not caused by how well you wash or what products you use to wash yourself or your clothing.