If you’re living with hidradenitis suppurativa (HS), you’re already aware of the impact it can have on your life.

But chances are that other people in your orbit don’t know as much as they could about the disease. That’s why it’s important to raise awareness for the condition — particularly in June, when Hidradenitis Suppurativa Awareness Week takes place.

It can be hard when your friends and family don’t know what you’re going through. If an HS flare is particularly difficult, it can also feel difficult to say no to loved ones who want to connect but who don’t understand your situation. You might worry about how your relationships will be affected.

Raising awareness about HS is important so your friends, family members, and acquaintances know how to support you. Check out five ways that you can get involved with HS awareness.

1. Start by Raising Your Own Awareness

Before you can create public awareness by sharing information with others, it’s a good idea to understand the specifics of HS, like HS symptoms, causes, and treatments.

HS is a chronic inflammatory skin condition that causes painful, recurring bumps (often called lesions). These lesions typically affect the armpits, groin, buttocks, and underside of the breasts. There’s currently no cure for HS, and it can be difficult to treat.

HS isn’t contagious or transmitted by sexual contact. HS is also not caused by poor hygiene.

Managing HS typically means seeing a dermatologist regularly. Treatment options from a dermatology expert might include topical therapies, oral medications, injected treatments, and sometimes surgical procedures.

2. Share Awareness Resources

After you’re armed with information about HS, you might feel more empowered to share your knowledge with others. The fastest and least expensive way for this kind of advocacy is through social media.

You can post information about HS, share details about the condition, and join communities of others working to raise HS awareness.

The Hidradenitis Suppurativa Foundation is a nonprofit organization committed to improving the lives of people with HS, along with their family members and caregivers. You can connect with the HS Foundation on Facebook, Instagram, X, and LinkedIn, where you’ll find information and awareness resources.

Hope for HS, another nonprofit organization, offers support groups, information about HS advances, and other resources. You can connect with Hope for HS on Facebook, Instagram, and X.

3. Use Relevant Social Media Hashtags

To ensure your messages on social media spread awareness to as many people as possible, consider using an HS-related hashtag, like #HS, #HidradenitisSuppurativa, or #HSAwareness. This way, your posts will be seen by more people who have the same interests, and they’re more likely to share and comment.

Other popular hashtags include #HSFoundation, #HopeforHS, #HSWarrior, #ThisIsHS, #LivingWithHS, #ThrivingWithHS, #HSAdvocate, and #HSAwarenessWeek. If you see posts by celebrities with HS, consider sharing those to help spread the reach of their messaging.

Social media posts help raise awareness for the condition. Posting also allows other people with HS to realize they aren’t alone. Joining an HS community, such as myHSteam, can also help you connect with others.

“The more awareness out there, the better!” wrote one myHSteam member. Another said, “I’ve always wanted to bring awareness to our condition but had no idea how to do it.”

What Members Are Saying About HS Awareness

“The more awareness out there, the better!”

“I’ve always wanted to bring awareness to our condition but had no idea how to do it.”

4. Participate in Awareness Activities

Another way to raise awareness about HS is to participate in an activity dedicated to the cause. You can walk or run for HS, play bingo, host a silent auction or fundraiser, or create a unique event that suits your interests.

You can help other people understand more about HS while having fun and working to raise funds for the cause. Contact the HS Foundation or Hope for HS to find out when HS events take place in your area or how to start your own.

If you’d like to participate in HS Awareness Week activities the week of June 6, register on the HS Foundation’s website. You can join webinars and other educational activities and also learn from HS experts.

To further raise awareness, consider wearing a purple ribbon. You can make one yourself by twisting a short piece of purple fabric or ribbon and fastening it with a safety pin.

5. Donate to Research

If you’re able to, you can donate to the HS Foundation to support HS research and advocacy. Even if you can’t donate, you can stay on top of the scientific research and legislative actions that come out of the donation efforts by following the HS Foundation online.

Join the Conversation

On myHSteam, people share their experiences with hidradenitis suppurativa, get advice, and find support from others who understand.

How do you get involved in HS awareness? Let others know in the comments below.