Hidradenitis Suppurativa Awareness Week Part 1:
Today, June 1st, 2020 is the first day of Hidradenitis Suppurativa (HS) Awareness Week. This week there will be three posts about HS. I am passionate about HS awareness because I suffer from the disease. I have had HS since I was 14, but only diagnosed last summer. Because of this, I was left untreated, and my condition progressed past stage 1. Untreated HS can cause lots of challenges. But education, particularly amongst medical professionals, can ensure early diagnosis.
Today’s topic is the basics, what HS is, and some myths about it. I will leave a little resource list at the bottom for you to check out if you need help. Or even just want to know more.
Hidradenitis Suppurativa or HS
HS (acne inversa) is an inflammatory skin disease. And about 1-4% of the population suffer from it. HS can affect any part of the body. But it is most common on the underarms, groin, under the breasts and thighs.
During puberty, a person starts to get boils and/or blackheads in these areas. The disease progresses through a person’s life. With reoccurring episodes causing scarring and sinus tracts. There are three stages of HS called the Hurley Stages, 1, 2 & 3.
HS is associated with several other conditions, including diabetes and inflammatory bowel disease. This typically means that people with HS are more likely to develop those conditions. Though not everyone does develop another condition. It is also thought to cause the lowest quality of life of any skin disease.
Nobody knows what causes HS, and there is no cure. Although, as more research is carried out, treatments are getting better. On cause, there are a few theories.
- The disease is one of the hair follicles which get blocked, causing the inflammation. That inflammation ruptures and causes damage above and below the skin.
- Genetics. Researchers believe that mutations in some genes may be responsible for the disease.
- The disease starts in puberty and can worsen around periods. So, researchers believe there is a hormonal influence.
HS can take an average of 7 years to diagnosis. Lack of awareness of by doctors and the general public, make the signs hard to read. As well as that, shame and embarrassment can prevent a person from seeking help.
There is no cure, but there are treatments. If you see a specialist, they can prescribe drug treatment if necessary. There are evidence dietary changes like cutting dairy, sugar and brewers’ yeast can help. In the later stages of HS, some people may need surgery to remove scar tissue.
Because there is little known of the disease, there are several myths in circulation. Myths do harm, they perpetuate shame and stigma. And prevent people from getting the support they need. So, we are going to do some quick-fire myth-busting.
Myth 1: HS is an STD
HS is not contagious at all.
Myth 2: HS is rare
HS is not rare. 1-4% of the population is more than you think. A rare disease in one that affects 1 in every 2000. HS affects about 28 (by Irish statistics).
Myth 3: Obesity & smoking cause HS
Nobody knows what causes HS. Being overweight is correlated with HS. But all that means is there is an association between the two things. It is possible that the same mechanisms that cause HS also cause obesity. That, of course, is not true of smoking, but there has still been no causal link established. Smoking may contribute to HS, but how is unknown.
What we do know is that HS effects a lot of different people of all ages, sex and size. None smokers can also develop HS. I am a non-smoker, for instance.
Myth 4: Poor Hygiene causes HS
Again nope. HS is not caused by poor hygiene. The dominant theory at the minute is genetics, and you can’t get dirty genes. That’s just silly. A wash called Hibiscrub is often recommended. It’s usually used in a medical setting because of its ability to sanitise. In fact, I have a joke that because I use Hibiscrub, I’m the cleanest person in almost any room.
Myth 5: HS is the result of poor lifestyle choices.
No. You can’t cause HS. Some lifestyle changes may help reduce symptoms. Some lifestyle factors may worsen symptoms. But you can’t eat your cure, nor can you run away from HS. Remember that everyone’s body works differently, and their environment differs too. There is no standard treatment and no known way to prevent the disease.
So, there you have it, your crash course in HS. If you are currently struggling with HS, I am so sorry that this is happening to you. Know that there is a vibrant and growing HS community online. Here are some online resources for you to check out:
- HidraWear products and blog
- The Irish Skin Foundation’s booklet.
- Facebook support groups
- Hope for HS
Full disclosure, I have been a guest writer on HidraWear and my utterly unbiased opinion it is a fantastic blog. There are posts of all areas of living with HS, check it out.
If this was your introduction to HS, and you are thinking “holy shit, how do you deal with that?” First, yes, we are warriors. The most important thing is that people are aware of the disease and don’t believe the myths. Everyone is aware of eczema and psoriasis. And as debilitating as those conditions are, there is general knowledge about them. Which makes recognition and treatment more common.
If I have missed anything or you have any questions, you can leave them in the comments. Also, don’t forget to check out the many wonderful organisations with events this week. And check back here on Wednesday for my post on HS and trauma.
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