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Hidradenitis Suppurativa (HS) is a chronic skin disease that I have been living with since I was 13 years old.

Throughout my years of living with Hidradenitis Suppurativa, I have noticed that a lot of people haven’t heard of the condition. Or, if they have heard of it, they don’t know a whole lot about it or a lot of what they think they know are common misconceptions.

So, here are the 10 most important things I want you to know and remember about Hidradenitis Suppurativa.

1. It is often misdiagnosed

Doctor talking to hidradenitis Suppurativa patient

There has been very little research carried out about HS and the research that has been done is relatively new. This means not a lot of people know about HS and it can often be misdiagnosed. Sometimes it’s misdiagnosed as acne, ingrown hairs, recurrent boil, bad hygiene or even an STD. Even though I first developed symptoms of HS at 13 I didn’t get diagnosed until I was 23. That was 10 years of being misdiagnosed and in turn not being treated correctly. Early diagnosis is key in HS.

2. Hidradenitis Suppurativa is not an STD

To follow on from point number 1, I want to be clear… Hidradenitis Suppurativa is not an STD. It is not contagious and cannot be transmitted through sexual activity.

HS is often misdiagnosed as an STD when it presents in the genitals, groin/buttock area.

3. There is no cure

One of the hardest things to hear about HS is the fact there is no cure.

Think about it. In my case, I started presenting symptoms at 13 but kept it to myself. By the age of 16/17, it had become so bad I needed to tell my mum who brought me to the doctor. The next couple of years were filled with multiple doctors, treatments that didn’t work and a few surgeries. At the age of 23 when I was finally given a diagnosis, I was delighted. Once you know what it is you can cure it, right? Wrong.

HS is a lifelong disease. As time goes on more research is being done and more treatments are becoming available but still no cure. If caught early, symptoms can be managed more effectively and it may stop the disease progressing to irreversible skin damage.

4. It’s not your fault

HS is not caused by your weight, smoking or poor hygiene. You can be the cleanest and healthiest person there is who never smoked a day in their life and still develop HS. The exact cause of HS is still unknown

5. Its mental effects are just as real as the physical ones

Worried woman on the corner of the bed

HS affects your body in a pretty nasty way. Let’s not beat around the bush: boils oozing smelly exudate is not attractive and is very unpleasant to live with. This can be harmful to a person’s self-esteem, self-worth and confidence. When all these things are affected it can cause people to have difficulty forming relationships and lead to them becoming hesitant about going into social situations.

The stigma associated with HS, along with the misconceptions, particularly the one mentioned in point number 2, can cause shame and cause people to become isolated.

Extreme fatigue is also a side effect of the condition, which can reduce motivation to maintain a healthy lifestyle. Building up the energy to get out of bed can be a struggle sometimes, let alone exercising, cooking and sometimes even going to work.

All of this together can cause depression and anxiety, which needs to be addressed just as urgently as physical symptoms.

6. It’s not as rare as you think

Did you know that up to 4% of the general population have HS? That is potentially over 301 million people. For context, that is just under the population of the entire United States and a higher percentage than people who have naturally red hair.

Since I started talking more about HS online, I’ve been amazed by the number of people I have met online with the condition and people that I’ve known for years and I never knew they had it. I’ve also had a few people message me saying they’ve had the symptoms but didn’t know what it was until they saw my posts.

In some cases, one tweet can make a world of difference. Let’s keep the conversation about HS going!

7. The pain is unbearable

HS pain is like a red-hot blade. It is sharp and searing. It’s the type of pain that can strike with the slightest of movements and make you yelp with surprise.

During times of flare-ups, it can make the simplest of tasks such as walking, reaching for something or even sitting extremely difficult. This can stop people from being able to carry out their jobs or even leave the house.

Even when your flare-up has healed the pain doesn’t go away. The severe scarring that can be left behind can be painful.

8. The HS community is very helpful

Four girls hiking at sunet

There are HS communities all over the internet. From Facebook to Twitter to Tumblr. These online communities can be a great way to meet other people who understand what you are going through. Not only are they welcoming and understanding but they are a great source for tips and tricks on how to manage the condition.

It’s good to know you’re not alone. You can join our very own HS community on Facebook.

9.  Atypical Hidradenitis Suppurativa is real

Those that know about HS know it affects the common areas such as the underarm, under the breast, thighs, groin and buttock. But when HS presents in places outside of these common areas, they can be hesitant to diagnose it as HS because the symptoms are not typical. This does not mean it is not HS. HS can present at any age on almost any body part.

10. HidraWear is here to help

The HidraWear team work very hard to produce a product that they hope will bring some relief. Not only that but they also work very hard to raise awareness of HS and educate those who may have not heard of it. If you would like to help us raise awareness of HS, follow us on social media or join our Facebook community.

Read more from Suzanne Moloney

Suzanne’s Journey with HS
How I Overcame My HS and Had The Trip of a Lifetime

HidraWear is more than just a wound care solution. It is a community. A community-built on trust, knowledge and empathy. We aim to write articles that will add value to our reader's life. To make sure you never miss an article, follow us on social media at @Hidrawear.