“Hidra what now?” If you’ve ever tried to explain hidradenitis suppurativa (HS) to someone and received that response, you know it’s important to raise awareness about the condition.
HS affects up to 4 percent of the global population, so it’s not a rare disease. Still, a lot of people don’t know what the heck it is. More understanding about HS can help stomp out stigma.
HS awareness week is June 7 to 12, 2021. HS is often confused with other conditions — such as ingrown hairs or acne — and misdiagnosed. Advocating for the condition might help someone seek medical attention for symptoms and receive an HS diagnosis. And early diagnosis is critical in preventing disease progression.
HS awareness week is coming in hot! So what should you do? There are a lot of ways to get involved.
Reach out to local newspapers, magazines, and even television and radio stations to remind them that HS awareness week is approaching. Be sure to contact media outlets a few weeks in advance to give them time to plan a piece.
Educate yourself and others by tapping into your social media networks. Read up on HS, either on your favorite HS organization websites or on blogs of those who write about their experiences with HS. Share their work in your feeds.
If you have HS, you can also post about your own experience. Talking openly about a chronic condition can be challenging, but your words, photos, or videos might help others living with the disease.
Social media is also a great venue for hosting a fundraiser for your favorite HS charity or organization. Set a goal and watch the donations pour in. Want to go bolder? Host a virtual fundraising event. A virtual charity walk, a bike ride, or a roundtable discussion on Zoom is a great way to go the extra mile during HS awareness week.
If you’re looking for reliable HS information or foundations and charities in need of donations, here are few sites to bookmark in advance of HS awareness week. Plus, you’ll want to keep tabs on what these orgs are up to year-round.
- Hidradenitis Suppurativa Foundation (HSF). Founded in 2005, the HSF is a nonprofit dedicated to providing the latest information and resources to people with HS and healthcare professionals. The HSF also hosts an annual 3-day educational conference, the Symposium on Hidradenitis Suppurativa Advances.
- Canadian Hidradenitis Suppurativa Foundation (CHSF). The CHSF is dedicated to fostering HS research and educating healthcare professionals about treatment advances and best care practices for people with HS.
- The Hidradenitis Suppurativa Trust. Formed in 2008, this UK-based charity focuses on raising awareness about HS, funding research on treatments, and generating support for people with the chronic condition. The charity features a Blue Ribbon Awareness Campaign for HS awareness week in the UK.
- Hope for HS. This nonprofit organization was started in 2013 and is volunteer-led by people with HS and caregivers. Hope for HS features various support group chapters across the United States.
By their very nature, awareness weeks are short-lived. But advocacy for HS should continue year-round. You can stay involved however you want to on an ongoing basis.
Sometimes the best awareness efforts for a chronic illness come from the people living with the condition. You can post about HS monthly on social media or start your own blog or vlog. Host the occasional online fundraiser, and talk to people about the condition when the opportunity arises. Stay informed about research and new breakthroughs in treatment so you can keep others up to date.
Keep in mind that although awareness efforts can sometimes be empowering, they can also be exhausting. If you’re engaging in year-round advocacy, don’t be afraid to take a timeout when you need to, especially if you need to care for your HS.
Staying involved year-round can also mean joining a support group for HS. No one understands what you’re going through more than others who also have the condition. And just by joining a group, you’re in turn providing support in solidarity to fellow members. Here are a few options.
#HSGlobal is a private, closed Facebook support group for people who have HS and people supporting awareness and research efforts.
Hope for HS, founded in 2013 and endorsed by the HS Foundation, has several support group options, including chapters in various cities. Join the private Facebook group, attend support group meetings that feature an HS expert, or register for one of the monthly community meetups for HS patients and caregivers. (All face-to-face meetings are being held on Zoom during the pandemic.)
Raising awareness about HS is important to spur research, elevate care, and help others with the condition. HS awareness week is June 7 to 12, 2021, and you can get involved in a number of ways big and small. Any effort helps shine a light.