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5 Ways To Get Involved With HS Awareness

Written by Torrey Kim
Updated on June 3, 2024

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. It can also feel difficult to say no to loved ones who don’t understand your situation because you might worry about how your relationships will be affected.

Raising awareness about HS is important so your friends, family members, and acquaintances can better understand 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. Read more about HS causes, signs and symptoms, and treatments.

HS is a chronic inflammatory skin condition characterized by painful, recurring bumps (often called abscesses or lesions), typically in the armpits, groin, and buttocks and the underside of the breasts. HS is sometimes called acne inversa. There is currently no cure for HS, and it can be difficult to treat.

HS is not contagious or transmitted by sexual contact. HS is also not caused by poor hygiene. Managing HS typically means seeing a dermatologist regularly. Treatment might include topical medications, 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 other people 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 to get information and awareness resources.

Hope for HS is another nonprofit organization that 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 appropriate 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.

Social media posts help raise awareness for the condition, and 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.”

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.

5. Donate to Research

If you’re able to, you can also 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.

Connect With Others Who Understand

On myHSteam, more than 41,000 people living with HS come together to ask questions, give advice, and share their stories with others who understand life with the condition.

Are you involved with HS awareness? Share your HS journey in the comments below, or start a conversation by posting on your Activities page.

    Updated on June 3, 2024
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    Torrey Kim is a freelance writer with MyHealthTeam. Learn more about her here.

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