Hidradenitis Suppurativa Australia

19/08/2025

🌏One of the most powerful things about HS Australia is the sense of connection and community we can build together. Living with Hidradenitis Suppurativa can often feel isolating, but knowing there are others who truly understand makes a huge difference.

That’s why we’d love to know where are you from? Whether you’re in a big city, a rural town, or somewhere in between, sharing your location might help you find others nearby who get it. You never know.. your next HS bestie could be just a comment away!

Let’s keep building this incredible community of support, understanding, and friendship. Drop your location below 👇 and let’s see just how far and wide our HS family reaches across Australia (and beyond!).

12/08/2025

Big news from HS Australia!
This year, we’re launching our very own HS Community Newsletter called HS Stuff! Sign up and get it straight to your inbox!

Think of it as your package filled with:
* The latest HS research & treatment updates
* Real stories from our community
* Upcoming events & awareness campaigns
* Ways to connect, advocate & get involved

Whether you’re living with HS, supporting someone who is, or just want to stay informed, this is for you.

✨ Sign up now and be part of the very first edition launching this year. Let’s make 2025 the year we stay connected, informed, and stronger together.
https://www.hidradenitissuppurativaaustralia.com.au/

10/08/2025

Your voice matters and sharing is one part of the advocacy journey.

Living with Hidradenitis Suppurativa (HS) is more than just managing a condition. It’s daily challenges of understanding our bodies and trying to navigate a journey filled with ups, downs, resilience, and moments only those in our community truly understand.

Every time one of us shares our experience, whether it’s a photo, a story, or even a single sentence of encouragement, we help to break down stigma and replace it with understanding, empathy, and connection. These shared voices have the power to reach someone newly diagnosed, someone struggling to find answers, or someone feeling alone in their HS journey.

We know that sharing can feel vulnerable and scary and you are in control of what you choose to share.
* You can share photos of yourself or images that represent your story.
* You can write about your experiences, big or small.
* You can choose to be named, or remain completely anonymous.

Your privacy is important. If you’d like to be part of future HS awareness projects but prefer to stay anonymous, we will make sure your story or image is shared in a way that protects your identity.

When we share our collective experiences, we show the world that HS is real, that it impacts lives, and that we are more than the pain we carry. We inspire change, fuel awareness campaigns, and give hope to others walking the same path.
If you have something to share, whether it’s a photo, a personal reflection, a tip, or even a single word, send it to us. Together, our voices are stronger, and together, we can create a future where HS is better understood and better supported. 💜

• Message us or email to be part of the next awareness project.
• Your story could be the one that changes someone else’s.

07/08/2025

My story was featured in That’s Life Magazine and it wasa little scary seeing it in print like that. If you want to read it, it is issue 31 and is available in store, online and will be on our website soon.
It’s not always easy to talk about the hard stuff but sharing our stories creates change, and empowers others to share their story however they can.

This is what Advocacy in Action really looks like. It's not always grand speeches or national campaigns, but the small, brave steps we take every day.
👂🏽 Talking with a friend,
💬 Having honest chats with family or colleagues,
🧡 Opening up to a stranger who might just need to hear they’re not alone.

These conversations build awareness, deepen empathy, and bring our communities together. That’s why I chose to share my story.
Thank you to Eva Lewicki, editor at That’s Life Magazine, for giving it a platform.
📢 Want to share your own experience? You can stay anonymous. Your story matters — and it could make a real difference in someone else’s life.

24/07/2025

HS Australia Advocacy Cards, coming soon!

Navigating tough GP appointments just got easier.
Our new cards are designed to support you in seeking diagnosis and treatment for Hidradenitis Suppurativa

💜 Empower your voice, one card at a time💜

23/07/2025

Paid Study Opportunity for Aussies Living with HS!
Do you have Hidradenitis Suppurativa? Your experience matters.
Take part in a research study and be compensated for your time.
Scan the QR code to participate!

12/07/2025

💜 Did you know? Hidradenitis Suppurativa Australia also runs a private Facebook support group just for Aussies (and our Kiwi friends) living with HS!

It’s a safe, understanding space to connect, ask questions, vent, and share with others who truly get it. We are a small community but mighty in our strength and courage.

This is in addition to our free monthly Zoom catch-ups and our growing Discord community. No one should have to navigate HS alone 💜

Click to join today and be kept up to date with news, events and advocacy in action.

10/07/2025

Advocacy in Action! 💜

Today we had the opportunity to meet with Joan Pease MP, a valued supporter in our community, to talk all things Hidradenitis Suppurativa (HS). It was a fantastic conversation filled with great questions about what living with HS is really like, the ongoing challenges people face, and the ways HS Australia is working to create better support and awareness across the country. And the weather was perfect for a little walk along the foreshore.

Behind the scenes, we are constantly advocating for improved care, fairer policies, access to wound care, and stronger recognition of the unique barriers faced by Australians living with HS. We want to highlight the extra challenges faced by women and First Nations people, who are often disproportionately impacted.

And remember that advocacy isn’t just big meetings and campaigns, it’s also about connection. That’s why we hold our monthly Zoom support catch-ups on the first Friday of every month. It’s a safe, friendly space for anyone affected by HS to come together, share, be heard, and remind ourselves we’re not alone in this. 💜

We’re proud of the work happening quietly in the background to improve lives, and we can’t wait to share more with you soon.

04/07/2025

💜 HS Awareness Week 2025 Wrap-Up 💜

HS Awareness Week 2025 was a huge success filled with connection, courage, visibility, and community. Across Australia, people came together to raise awareness, support each other, and get a better understanding of Hidradenitis Suppurativa.
In Western Australia, despite early rain, the clouds cleared and the community showed up in force for the HS Awareness Walk. The atmosphere was filled with energy, connection, and pride. It was a clear reminder of the strength and resilience within our HS community.

Brisbane hosted two events this year! An in-person support group meeting at the Cleveland Library filled with shared stories, and deep connections among attendees and a few laughs because you have to laugh some days or you will cry. Cannot wait to do another one of these! And the HS Awareness Walk at Thorneside included face painting, cupcakes, giveaways, and lots of heartfelt conversations. The turnout and energy were incredible.

Major landmarks across Australia turned purple for HS Awareness, creating stunning visuals and sparking conversations nationwide. Thank you to everyone who helped light up our cities and capture photos, every share helped raise awareness.
We were proud to have a stand at the Australasian College of Dermatologists Annual Scientific Meeting (ACD ASM 2025), where we connected with clinicians, researchers, and advocacy groups from around the country. The opportunity to share insights, build relationships, and strengthen patient focused collaboration was incredibly valuable. These conversations help drive change from the inside out and they’re only getting stronger.

Thank you to every person who joined an event, shared a post, wore purple, or supported someone living with HS. Whether you walked, listened, advocated, or simply held space for someone you made a difference.
We're already looking ahead to HS Awareness Week 2026, and trust us, it’s going to be even bigger.

27/06/2025

💜 Brisbane really stepped up and made us proud! 💜

As part of HS Awareness Week 2025, landmarks across the country lit up in purple to shine a light on Hidradenitis Suppurativa (HS), a painful, chronic, and often invisible condition affecting hundreds of thousands of Australians and people around the globe

Thank you to everyone who shared their stories, snapped photos, and stood with our community this week. The support has meant the world.
Our full wrap-up is coming soon so keep your eyes on our socials!



Shout out to the incredible New Heights Productions for taking these drone shots for our celebration .au

13/06/2025

If you are a female with HS:
Have you been pregnant❓
or,
Are you currently pregnant❓
The researchers wish to learn about your experiences with HS during pregnancy, please.

HS and Pregnancy Questionnaire

Researchers are investigating whether females with (HS) experience any changes in their HS when they are pregnant.

If you are a female with HS:

Have you been pregnant❓
or,
Are you currently pregnant❓

The researchers wish to learn about your experiences with HS during pregnancy, please.

Note: This study has received ethical approval.

If you wish to learn more and participate, please scan the code in the image and/or visit the comments for a 🔗to the study.

Thank you very much 🙏


People with HS ( )

09/06/2025

💜💜💜 THANK YOU, HS WARRIORS! 💜💜💜

As HS Awareness Week 2025 comes to a close, we want to take a moment to sincerely thank every single one of you who participated, showed up, shared, and supported this campaign in your own way.

From our community walks across the country, to the stunning landmarks lighting up purple across the nation- you embraced this week with heart, pride and resilience 💪💜

To those who joined our in-person support meeting, took time to share your stories, snapped purple-lit photos, and reminded others they’re not alone. Thank you!!! Your openness, strength and generosity make our HS community stronger than ever.

Together, we walk this path. Together, we push for higher diagnosis rates, better treatment options, improved quality of care and one day, a cure.

HS Australia will never stop advocating, supporting and raising awareness for every single person living with and awaiting a diagnosis of Hidradenitis Suppurativa.

💜 We see you. We hear you. We stand with you.