If you’re living with hidradenitis suppurativa (HS), you’re already aware of the impact the condition can have on your life — but chances are strong 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, which is 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, and acquaintances can better understand how to support you. Check out five ways that you can get involved with HS awareness.
Before you can create public awareness by sharing information with others, it’s a good idea to understand the specifics about HS. Learn more about the causes, signs and symptoms, and treatments for HS.
Hidradenitis suppurativa is a chronic inflammatory skin condition characterized by painful, recurring bumps (often called abscesses or lesions), typically in the armpits, groin, buttocks, and the underside of the breasts. HS is sometimes referred to as acne inversa. There is currently no cure for HS, and it remains difficult to treat.
HS is not contagious nor is it transmissible by sexual contact. It’s also not caused by poor hygiene, although antibacterial soaps may be part of the treatment. Managing HS typically means seeing a dermatologist regularly and staying on top of the treatment options by working with your dermatology team.
After you’re armed with information about HS, you can share it with others. The fastest and least expensive way form of advocacy is using social media. You can post information about HS, share details about the condition, and join communities of other people who are also working to raise awareness about HS.
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, and #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.
Social media posts help raise awareness for the condition, and posting also allows other people with HS to realize they aren’t alone. Joining a HS community on social media, 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.”
Another way to raise awareness about HS is by participating in an activity dedicated to the cause. You can walk or run for HS, play bingo, host a silent auction or fundraiser, or even create a unique event that works for your interests. You can help other people understand more about HS while having fun and working to raise funds for the cause.
If you are able to, you can also donate to the HS Foundation to support HS research and advocacy.
Even if you aren’t able to 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.
On myHSteam, more than 24,000 people living with HS come together to ask questions, give advice, and share their stories with others who understand life with the condition.
Share your HS journey in the comments below, or start a conversation by posting on your Activities page.