Hidradenitis Suppurativa Australia at a Glance

Hidradenitis suppurativa (HS), is a chronic condition that affects anywhere on the body that has hair follicles but is most commonly seen in the armpits, buttock, groin, and under the breasts. It is characterised by persistent or recurrent boil-like nodules and abscesses that culminate in a purulent discharge, sinuses, and scarring.

Many complications can occur with HS and delay of diagnosis leads to greater issues for patients. Treatments include antibiotics and immunotherapy and surgery. The average delay from onset of symptoms to diagnosis can be as long as 15 years.

Hidradenitis Suppurativa Australia was established in 2022 by a HS warrior who waited 25 years for her diagnosis, with the aim of increasing awareness and education of HS. Hidradenitis Suppurativa Australia is going to break barriers and stigma so that diagnosis and treatment can begin earlier. The support group will offer monthly online meetings with others living with HS so follow us on Instagram and for details of when that will begin.

Hidradenitis Suppurativa Australia is working together with medical professionals, patients, researchers and the general public to improve the lives of those living with HS.

Home: Who We Are

Hidradenitis Suppurativa Australia

Home: Welcome

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.

#HSAustralia #HidradenitisSuppurativa #AdvocacyInAction #HSCommunity #HSWarriors #LetsTalkHS

💜 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!

#HSAwarenessWeek #BrisbaneGoesPurple #HidradenitisSuppurativa #InvisibleIllnessAwareness #HSAustralia #illuminate4HS

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

💜💜💜 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.

#HSAwarenessWeek #HSWarriors #PurpleForHS #HSAustralia #HidradenitisSuppurativa #HSCommunityAU #HSWalk2025 #ShineALightOnHS #TogetherWeFightHS #HSAustralia

💜 💜 Happy HS Awareness Week 2025 💜 💜

In May we celebrated international clinic trials day which is commemorates the start of the first randomised clinical trial by James Lind to find the cause of scurvy. This day is dedicated to recognising the contributions of clinical research professionals, patients, and participants in advancing medical knowledge and improving healthcare.

During this day, I had the privilege of sharing my story as part of a special session with Sanofi. This is another name you may recognise in the HS Space because they are a company genuinely dedicated to partnering with patients to drive meaningful change in the HS community. It was more than just a speech; it was a reminder of why our voices matter and I was really encouraged that so many people wanted to hear our challenges.

Clinical trials don’t just test treatments, they are how breakthroughs happen. They are built on the courage of everyday people living with conditions like Hidradenitis Suppurativa who step up, speak out, and push for better. It’s how new options are developed, how quality of life improves, and how one day, we’ll get the answers we deserve and a cure.

I spoke about the different pain, the hidden battles, and the moments not talked about enough. And about how standing together makes our voices louder. Together they are louder to companies, louder to researchers, louder to decision-makers, and louder to those still waiting for a diagnosis to advocate for more.

💜 HS Australia will always fight for earlier diagnoses, better access to care, and more opportunities for our community to be heard. Because you deserve it. If you want to be heard, please share your story, connect with us on socials or via email on our website. If you contact us, we don’t share anything without your consent or share your information with anyone else.

#HSWarriors #HSAustralia #Sanofi #ClinicalTrialsDay #HSAwarenessWeek #PurpleForHS #HSCommunityAU #Illuminate4HS

https://www.linkedin.com/posts/sanofi_ictd2025-clinicaltrials-activity-7330481550725115904--yUD/?utm_medium=ios_app&rcm=ACoAADw_PUUBB-iyEINrV2v3Az7Xh3sNO8RKCcc&utm_source=social_share_send&utm_campaign=messages

💜💜 CANCELLED💜💜

Sorry for the short notice but our lovely volunteer has been struck down with a bug and does not want to share it so we have had to make the tough decision to cancel this one today.

We will attempt to rebook and organise a new date, but this does take time so keep your eye out on socials for updates.

If you want to head down to the park or Sound Tube to see them lit up purple, take pics and connect with others from the HS community, please do. There just won't be the giftbags or cupcakes for that or HS Australia Volunteer

#PurpleForHS #HSAustralia #HSWarriorsVIC #HSAwarenessWeek #HSCommunityAU #HSWalkVIC

💜💜 MELBOURNE — don’t forget!💜💜

This Friday, June 7 we’re walking together for HS Awareness Week at Ron Barassi Senior Park, Docklands from 4–5PM VIC time 💪💜

And to top it off — Bolte Bridge and the Sound Tube will be glowing purple that night too!

📸 Snap a pic on your way home and tag us @hidradenitissuppurativaaus with #PurpleForHS — let’s light up Melbourne together!

#HSWalkVIC #PurpleForHS #HSAwarenessWeek #HSWarriorsVIC #HSAustralia

💜💜 HAPPY HS AWARENESS WEEK 💜💜

Apologies for the late reschedule everyone! 💜 Due to some unexpected technical issues with Zoom (and us frantically chatting with Zoom support right now), tonight’s HS Australia support meeting won’t be able to start as planned.

To make sure we don’t lose this important catch-up, we’re moving the meeting to Thursday June 20. We’ll update the registration link shortly so everyone can access the new date.

Thanks so much for your patience and understanding — technology, hey! 💻💜

#HSAustralia #HSWarriors #HSSupport #HSAwareness

💜 REMINDER — HS Awareness Support Meeting is on TODAY!

Join us at 5:00 PM QLD time (June 6) for our virtual HS Australia Support Meeting. A chance to connect, share, and be part of a community that truly gets it.

📌 Remember to register at the link pinned to the top of our page.
We ask everyone to register to help keep this a safe, spam-free space for our HS Warriors.

💬 See you there! 💜

#HSAwarenessWeek #HSWarriors #HSAustralia #HSCommunity #SupportMeeting

💜💜 VICTORIA IS GOING PURPLE! 💜💜

This June 7, the iconic Bolte Bridge and Sound Tube in Melbourne will light up in brilliant purple for HS Awareness Week 2025!

Together, we’re shining a light on Hidradenitis Suppurativa — a chronic, painful condition that affects 1 in 100 Australians but remains largely invisible.

📸 Melbourne fam, we want to see your purple pics! Snap a shot and tag us @hidradenitissuppurativaaus with #PurpleForHS to show your support 💜

Let’s turn the city purple and raise awareness, one landmark at a time!

#HSAwarenessWeek #BolteBridge #MelbourneGoesPurple #HSWarriorsVIC #HSCommunityAU #HSAustralia

💜✨ BRISBANE — TODAY’S THE DAY!

It’s June 5 and Brisbane is lighting up PURPLE for HS Awareness Week 2025!

From the Story Bridge to Suncorp Stadium, every major bridge and landmark in the city will glow in solidarity with those living with Hidradenitis Suppurativa 💡💜

📸 Head out tonight, snap those purple pics and tag us @hidradenitissuppurativaaus with #PurpleForHS
Let’s fill Brisbane’s feed with purple pride and raise awareness for a condition that deserves to be seen.

Thank you, Brisbane — let’s light it up together!

#HSAwarenessWeek #HSWarriors #BrisbaneGoesPurple #HSCommunityAU #HSAustralia #Illuminate4HS

So many great companies and many really exciting things to share after this years ACD ASM 2025. (Australasian College of Dermatologists Annual Scientific Meeting 2025).

When companies start listening to the people they are treating, change happens. Life gets better when our challenges and triumphs are recognised. Companies these days are finally including the patient voice in their efforts to create treatments and cures.
A company that you might see in the HS space is UCB. Their motto is ‘Inspired by patients, driven by science is UCB. More clinicians, more medical professionals, more companies in general are recognising the power of the patient voice and we love to see it. We absolutely deserve to be the focus of research, of treatments, of solutions because we are the ones impacted.

For years I have tried to describe how HS feels to someone else.You know how they say seeing is believing? Well, see this and believe me when I tell you that HS is one of the MOST painful, debilitating, hard to manage, hard to socialise with, work with, live with, thrive with condition and you can’t see it 99% of the time. Believe me if you ever saw my wounds you’d never forget them.

You might forget my words but you won’t forget these visuals. Imagine feeling like you are sitting on a chair of pain because no matter how you move, you cannot get comfortable. Or sleeping on a bed of glass and what the impacts of not being able to rest mean for the rest of your life. Imagine not feeling okay in your own home because you are in pain.

To see this in real life at the ACD ADM, as someone with HS, was mindblowing amazing. The best part is that HS patients helped create this. How much does this resonate with you? I feel good knowing that more and more companies, not just UCB but so many were at the ACDASM and showing us just how much they value our thoughts and experiences. We matter <3

I am full of hope. I will hold on to that hope forever. Hope for better treatments, hope for earlier diagnosis, hope for more tangible support and hope for a cure.

#ACDASM2025 #HSAUSTRALIA #UCB #unbearablehome #HSAwarenessWeek
#HSAware #illuminate4HS

💜 BRISBANE IS GOING PURPLE!💜

On June 5, the entire city will light up in purple for HS Awareness Week 2025! That’s right — every major bridge, landmark and icon across Brisbane will glow in support of the HS community 💜

From the Story Bridge to Suncorp Stadium, Victoria Bridge to Brisbane City Hall and more — Brisbane’s skyline will be a sea of purple, raising awareness for this painful, invisible condition that affects 1 in 100 Aussies.

📸 We need you!
Grab your mates, hit the city and snap your best purple pics! Tag us at @hidradenitissuppurativaaus and use #PurpleForHS or #illuminate4HS.
Let’s flood social media with purple and prove just how powerful awareness can be!

💜 Because no one with HS should walk this path alone.

#HSAwarenessWeek #HSWarriors #PurpleForHS #BrisbaneGoesPurple #HidradenitisSuppurativa #HSCommunityAU #HSAustralia

💜 WA is going ALL the WAY purple for HS Awareness Week! 💜

On June 4, iconic WA landmarks like Matagarup Bridge, Sky Ribbon Bridge, Joondalup Drive Bridge, Mount Street Bridge and GFF Tunnel GNH Port Hedland will be glowing PURPLE in support of our HS community 💡💜

We see you, WA — showing up loud, proud, and shining bright for awareness, connection and support. Snap those purple pics and let’s fill our feeds with purple power!

#WAAllTheWay #HSAwarenessWeek #PurpleForHS #HSWarriors #MatagarupBridge #HSCommunityAU #illuminate4HS #HSAustralia

💜 Neville Bonner Bridge is going PURPLE!

From June 2–5, the stunning Neville Bonner Bridge in Brisbane will be lit up in vibrant purple for HS Awareness Week 2025!

Each light represents strength, awareness, and solidarity for those living with Hidradenitis Suppurativa — a painful, under-recognised skin condition affecting so many Aussies with too many not yet diagnosed

📸 Brisbane locals — snap a purple pic while it’s glowing and tag us @hidradenitissuppurativaaus with #PurpleForHS. Let’s flood those feeds with purple power!

#NevilleBonnerBridge #PurpleForHS #HSAwarenessWeek #HSWarriors #HSCommunityAU

💜🌳 Wellington Point is glowing purple!

As part of HS Awareness Week 2025, both Wellington Point Reserve and the Village Green at Wellington Point have lit up in beautiful purple 💡💜

These local favourites are shining bright to raise awareness for Hidradenitis Suppurativa — a painful, under-recognised skin condition that affects so many Aussies but most are not diagnosed.

📸 If you’re down by the point, snap a purple pic and tag us @hidradenitissuppurativaaus with #PurpleForHS — let’s show our bayside pride and stand with our HS Warriors!

#HSAwarenessWeek #PurpleForHS #WellingtonPoint #HSCommunityAU #HSWarriors #HSAustralia

💜🏛️ Queensland Parliament is going PURPLE! 💜

On June 2- 8, Parliament House in Brisbane will light up in vibrant purple to mark the final night of HS Awareness Week 2025 💜

This powerful gesture helps shine a light on Hidradenitis Suppurativa, a painful, chronic and often invisible condition affecting thousands of Australians.

📸 If you’re in the city, snap a pic of Parliament House glowing purple and tag us! Let’s show the nation that Queensland stands with the HS community.

#PurpleForHS #HSWarriors #HSAwarenessWeek #QLDParliament #HSCommunityAU #HidradenitisSuppurativaAustralia

💜 Logan is going purple!💜

We’re so excited that the Logan Water Towers will be lighting up purple on June 2 to mark the start of HS Awareness Week 2025!

A huge thank you to Logan City for standing with the HS community and helping us shine a light on this painful, under-recognised condition.

📸 If you spot them glowing purple, snap a pic and tag us — let’s show the world Logan cares!

#PurpleForHS #HSWarriors #HSAwarenessWeek #LoganCity #LightUpForHS #HidradenitisSuppurativaAustralia #HSCommunity #Illuminate4HS

🏳️‍🌈💜 Happy Pride Month from HS Australia!

As we mark HS Awareness Week 2025, we also want to celebrate pride month! We proudly stand as allies to our LGBTQIA+ community. HS Australia is a safe, welcoming space for everyone — no matter how you identify.

We acknowledge that when we use terms like male and female, it’s because current research and medical literature on Hidradenitis Suppurativa is limited in its language. But we are actively advocating for inclusive research and better recognition of gender-diverse and LGBTQIA+ voices in HS care.

💜 To every HS Warrior — you are valid, valued, and seen here 💜

#PrideMonth #HSAwarenessWeek2025 #HSAustralia #LGBTQIA #InclusiveHealthcare #HSCommunity #HSWarriors #YouBelongHere

First up for HS Awareness Week 2025 we have Logan Lighting up Purple on June 2nd!!

Jacaranda Tower - Brookvale Drive, Underwood
Telfer Street Tower - Telfer Street, Shailer Park
Wineglass Water Tower - Wineglass Drive, Hillcrest

A bold beacon for our community and a symbol of awareness and support for those living with Hidradenitis Suppurativa. Keep an eye out June 2nd!
Remember to snap a pic and share with us!
#HSAustralia #HSAware #HSAwarenessWeek #HSWarriors #illuminate4HS

What are you up to this weekend? We are getting ready for the Australasian College of Dermatologists Annual Scientific Meeting 2025. Looking forward to meeting other support groups, dermatologists and delegates. It's a jam packed weekend as we also prepare for HS Awareness Week starting 2 June!!

#ACDASM2025 #HSAware #HSAustralia

💜 The country is lighting up for HS Awareness Week 2025 — and we’re thrilled to announce that The Star Brisbane will be shining purple on June 5 💜

From June 2–8, iconic landmarks across Australia will glow in solidarity with the HS community, raising awareness for Hidradenitis Suppurativa.

Keep your eyes on the skyline and help us spark conversations. Snap a photo of any purple landmarks you spot and tag us at @hidradenitissuppurativaaus
Because visibility matters. 💜

#HSAwarenessWeek #HSWarriors #HSCommunity #TheStarBrisbane #PurpleForHS #illuminate4HS #HSAustralia

💜💜 We’re lighting up the country for HS Awareness Week 2025! 💜💜
From bridges to towers, landmarks around Australia will shine purple to honour those living with Hidradenitis Suppurativa and raise awareness for our community.

✨ Keep an eye out for your local landmark going purple! Snap a pic and share! #illuminate4HS #HSAwarenessWeek #HSWarriors #PurpleForHS #HidradenitisSuppurativaAustralia

🚨 QUEENSLAND, IT’S YOUR TURN! 💜

(Location Change)
HS Awareness Week is almost here and we’re marking it with a community walk at Thorneside! There’ll be FREE face painting for kids and plenty of purple treats!

Join us for an afternoon of connection, raising awareness for HS, and showing the country how Queensland gets it done. Let’s come together for our community and support those living with HS across Australia.

📅 Date: Saturday 7 June 2025
⏰ Time: 3:00 PM- 5:00PM QLD time
📍 Location: William Taylor Memorial Sportsfield (next to the hall)
200 Mooroondu Road, Thorneside

Bring your friends, family, or just yourself — let’s show everyone how strong our QLD HS Warriors really are! 💜

Register now to help us plan numbers and go in the draw to win some awesome prizes!

#HSWarriorsQLD #HSAwarenessWeek #HidradenitisSuppurativa #HSAustralia #WalkTheTalkQLD

Clinical Trials Day is celebrated globally each May 20 to recognize the day in 1747 that James Lind, a ship's surgeon in the British Royal Navy, started what is often considered to be the first randomized clinical trial.

Clinical trials change lives. They help discover new treatments, improve care, and give people living with conditions like Hidradenitis Suppurativa hope for a better future.
Every trial brings us one step closer to safer, better options and maybe one day, a cure. 💜

We honour those who participate, those who research, and those who advocate for more HS research right here in Australia and globally
#InternationalClinicalTrialsDay #HSResearch #HSAustralia #HSCommunity #HopeForHS

💜 In-Person HS Support Meeting for HS Awareness Week💜

We’re so excited to host an in-person HS Support & Awareness Group Meeting this HS Awareness Week in Cleveland, QLD!

Come along, connect with others who truly understand, and be part of the movement to bring HS out of the shadows.
📅 Date: Saturday 7 June 2025
⏰ Time: 11:00am- 11:45am. QLD time
📍 Location: Cleveland Library Meeting room

Tickets are free but limited — please register to save your spot!

We can’t wait to see you there 💜
#HSWarriors #HSAustralia #HSCommunity #HSAwarenessWeek #YouAreNotAlone #HSQueensland

🚶‍♂️ Victoria — We’re Walking Together for HS! 💜

HS Awareness Week is on, and Victoria — it’s your turn to step up for our community.
Join us at Ron Barassi Senior Park in Docklands for a casual walk, purple chocolates, and the chance to connect with others who truly get it.

📅 Date: Saturday 7 June 2025
⏰ Time: 4:00pm VIC time
📍 Location: Ron Barassi Snr Park, Docklands

Please register for numbers and get ready to show up in your purple and let’s show Victoria what community support looks like 💜

#HSWarriorsVIC #HSAwarenessWeek #HidradenitisSuppurativa #HSAustralia #WalkTheTalkVIC

🚶‍♀️ WA — Let’s Walk the Talk! 💜

Join us in Perth this HS Awareness Week for our WA community walk!
We’re meeting at the beautiful Matagarup Bridge for an afternoon of connection, purple goodies, and solidarity for our HS Warriors.

📅 Date: Wednesday 4 June 2025
⏰ Time: 5:00pm WA time
📍 Location: East Perth side of Matagarup Bridge

Bring your family, friends, and support crew — let’s make some noise for HS and shine a light on this often invisible condition 💜👟

#HSWarriorsWA #HSAwarenessWeek #HidradenitisSuppurativa #HSAustralia #WalkTheTalkWA

💜 HS Support Meetings – You’re Not Alone! 💜

Join us on the first Friday of every month at 5pm QLD time for our Hidradenitis Suppurativa Australia Support Meetings. A safe, supportive space to connect, share, and learn.

📅 When: First Friday of every month
⏰ Time: 5pm QLD time
📍 Where: Zoom (register below!)

👉 https://us06web.zoom.us/meeting/register/tZIoce-rqD8uGdCtig46B-pbPhEqZRTyUtiC#/registration

Whether you’ve just been diagnosed, are awaiting answers, or have been living with HS for years — you are welcome here. 💜

#HSAustralia #HSWarriors #HSCommunity #HidradenitisSuppurativa #YouAreNotAlone

Today, on ANZAC Day, we pause to honour the courage, sacrifice and spirit of those who served.

They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning.
We will remember them.

💜 Lest We Forget.

💜 Advocacy is everyone’s business 💜
When we say this, we mean that creating takes all of us. Every voice matters, and when people living with HS speak up, it brings the condition out of the shadows and into the rooms where decisions are made.
We’re working on resources to support the HS community in advocating for better care, awareness, and support but you don’t have to wait for us to get started.

Today, you can:
✅ Contact your local, state or federal MP
✅ Request a short meeting (online or in person)
✅ Share your experience of living with HS
✅ Talk about the barriers you’ve faced, and what change would mean to you

Real stories spark real change. Let your voice be part of the movement. Stay tuned for advocacy resources coming soon 💜💜

#HSAustralia #HSAdvocacy #MakeHSVisible #ChronicIllnessMatters #HidradenitisSuppurativa #InvisibleIllness #YouAreNotAlone #AdvocacyIsEveryonesBusiness #SpeakUpForHS

💼 Let’s talk workplace adjustments and HS 💜

Workplace adjustments can make a huge difference in managing Hidradenitis Suppurativa or any chronic condition, while staying connected to work. Depending on where you live, laws may vary about employer responsibilities but in general, employers must not discriminate against someone based on a medical condition or their support needs.

You don’t have to disclose your diagnosis if you’re not comfortable. Instead, focus on what you need to do your job safely and effectively, whether it’s flexible hours, a different chair, time off for treatment, or a breathable uniform. If your workplace has a special team for handling adjustments, ask to speak with them. The more information you can provide about what you need, the easier it is to implement. For example if you need a different chair or flexible hours for attending appointments, it's important to share what you need.

Not everyone will have heard of HS, so self-advocacy is so important. If you’re met with resistance, it’s often a lack of understanding which is not your fault. Don’t be afraid to bring support letters or suggest resources for your employer to understand the impacts of HS better.

You deserve to be safe, supported, and respected at work.

#HSAustralia #HidradenitisSuppurativa #WorkplaceAdjustments #DisabilityAdvocacy #InvisibleIllness #ChronicIllnessAwareness #YouAreNotAlone

📣 Want to share your HS story? 💜

We’re always looking for brave voices from the community to feature on our page. Whether it's a quote, a photo, a video, or your journey, your story matters and it could help someone feel less alone.

Opportunities pop up throughout the year, so if you’re keen to be involved, connect with us!

#HSAustralia #HSWarrior #HidradenitisSuppurativa #HSAwareness #ShareYourStory #ChronicIllnessCommunity #YouAreNotAlone #InvisibleIllness #HSVoices

🌈 HS Australia stands with the LGBTQIA+ community 💜

We believe in inclusion, support, and amplifying all voices—because everyone deserves to be heard, respected, and valued. Living with Hidradenitis Suppurativa (HS) can be challenging, and no one should have to face it alone. We are committed to fostering a safe, welcoming space for all, where every person can share their story, access support, and be part of a community that understands.

You are seen. You are valid. You are not alone. 💜🏳️‍🌈
If you have ideas of how we can be more inclusive with our words and actions, please reach out.

https://www.facebook.com/groups/177666415062713/

Remember we have our closed facebook group and you can join us for our monthly support meeting on Zoom. Register and attend first Friday of every month at 5pm.

#hswarriors
#HSAustralia #LGBTQIA+ #InclusionMatters #YouAreNotAlone #HSWarriors

Thank you to the Global Healthy Living Foundation for this awesome interactive guide to Hidradenitis Suppurativa. A new version specifically for Aussies is in the works and we cannot wait to share with you. For now, please use the link below to access the guide.

https://ghlf.org/hspatientguide/?utm_source=hsausorg...

#HSCommunity #PatientAdvocacy #HSAustralia #HidradenitisAwareness #research #HSJourney #SupportMatters #HSsupport #CreakyJointsAustralia

Your voice matters and you can share it how you want.
Join us on instagram, facebook or zoom and get support, share stories and raise awareness of Hidradenitis Suppurativa.

https://www.facebook.com/groups/177666415062713/

https://www.facebook.com/HidradenitisSuppurativaAus

https://www.instagram.com/hidradenitissuppurativaaus/

https://www.hidradenitissuppurativaaustralia.com.au/

#HSCommunity #HSAustralia #HSWarriors #InclusionMatters #PatientAdvocacy #HSVoices #HidradenitisAwareness

🚨 Reminder! 🚨
Our HS Australia community meeting is happening today at 5 PM QLD time! ⏰💜
All Australian and New Zealand members are welcome to join. This is a great chance to connect, share, and support each other.
See you there! 💜✨ #HSAustralia #HSCommunity #YouAreNotAlone

Register in advance for this meeting:
https://us06web.zoom.us/meeting/register/tZIoce-rqD8uGdCtig46B-pbPhEqZRTyUtiC

After registering, you will receive a confirmation email containing information about joining the meeting.

📢 PBAC Submissions Closing Soon – Have Your Say! 📢

The Pharmaceutical Benefits Advisory Committee (PBAC) submission deadline is 25th March, and this is your chance to have your voice heard! 💜 If you want to submit a comment about a possible new treatment for HS, now is the time.

HS Australia will be making a submission on behalf of the group, so if you’d like to add your voice but aren’t sure how to submit your own comments, we can include your input and you can be anonymous

📩 Send us your thoughts, experiences, and what better access to treatment would mean for you. Every voice counts in advocating for improved options for HS care!

#PBAC #HSAustralia #HidradenitisSuppurativa #PatientAdvocacy

A huge thank you to the incredible teams at SES, QPS, and Energex for their tireless efforts in keeping communities safe, responding to emergencies, and restoring power in the wake of Cyclone Alfred. Your dedication and hard work do not go unnoticed, and we are truly grateful for all that you do. HS Australia is safe, the cleanup is underway and our thoughts are with those still affected. 💜

#ThankYouSES #ThankYouQPS #ThankYouEnergex #CycloneAlfred #HSAustralia

HS Australia’s February meeting is cancelled due to Cyclone Alfred. Please take care, especially if you're in its path.

#HSAustralia #HidradenitisSuppurativa #CycloneAlfred #StaySafe #CommunitySupport

New Trial Information!!
There are several possible trials available and if you are interested in more information, please contact Sinclair Dermatology for queries.

These are VIC based but coming soon are some trials in QLD and NSW so keep your eyes out for those.

#HidradenitisAwareness #HSWarriors #HSAustralia #HSJourney #HSVoices #SupportMatters #research

📢 HS Australia February Support Meeting Recap! 💜

Great to see everyone at our Feb support meeting! We’ve got exciting things ahead, and really thrilled to meet some newbies. Remember you don't have to turn on cameras and we do not record these so it is a safe place.
A quick reminder to fill out the PBAC feedback form—your voice matters! 📝💙 Plus, we’re updating our website with HS Specialists so you won’t have to spend forever searching for the right doctor. 👩‍⚕️🔍

Also, a heads-up that our meetings run on AEST (QLD time)—which is currently one hour behind NSW. If you get mixed up, no stress, just pop in when you remember! See you next time! 💜✨ #HSAustralia #HSWarriors #SupportMatters #HSAustralia #HidradenitisAwareness #HSVoices #HSJourney

HAVE YOUR SAY!!!

Comments open for bimekizumab for the treatment of moderate to severe hidradenitis suppurativa.
This is your chance to see more treatments available to Aussie patients of HS. Comments will close on 26 March 2025 and I know that seems like heaps of time BUT time catches up quickly so if you have the time to do it today, please do so.

In order to make new treatments available to those in need, the Pharmaceutical Benefits Advisory Committee (PBAC) look to patient advocacy groups to provide commentary on the lived experience of HS, including how HS impacts daily life and patient experience with Bimekizumab for the treatment of HS (if applicable).

The PBAC is an independent expert body appointed by the Australian Government. Members include doctors, health professionals, health economists and consumer representatives. Its primary role is to recommend new medicines for listing on the PBS. No new medicine can be listed unless the committee makes a positive recommendation.

Have you experienced Bimekizumab already? Share your thoughts on it. If you have a different treatment, share your HS story and the impacts it has on your life. Anything you want to say about how HS impacts your everyday life, the impact on ability to work, quality of life and social life, the physical and mental impacts of HS and current treatments is all worthy of being shared if you feel comfortable.

Our voices are valuable and we deserve more treatment options.

Click the link to have your say before March 25 2025

https://ohta-consultations.health.gov.au/ohta/pbac-may-2025/consultation/subpage.2021-08-13.1345934449/

#HiddenHS #HSJourney #HSVoices #HSsupport #HSAustralia #HidradenitisSuppurativaAustralia #HSWarrior #HidradenitisAwareness #beautifyHS #EndHSStigma #RarelyTalkedAbout #HSWarriors #empowered

Welcome to another HS Specialist Spotlight!

For our Western Australian Warriors we have 3 in 1 for you at Fremantle Dermatology.
Here you can see: Clinical Associate Professor Kurt Gebauer OAM, Dr Hannes Gebauer OAM and Dr Eunice Tan at two locations!

Fremantle229 High St,
Fremantle WA 6160
T (08) 9430 4488
F (08) 9430 6241
Mon - Fri 07:00 AM 06:00 PM

And
Rockingham50 Thorpe St,
Rockingham WA 6168
T (08) 9591 1111
F (08) 9591 1000
Mon - Tue 07:00 AM 06:00 PM
Wed 07:00 AM 04:30 PM
Thu 07:00 AM 05:00 PM
Fri 07:00 AM 04:00 PM

#HSVoices #HidradenitisSuppurativaAustralia #HSsupport #HSAustralia #HiddenHS #HSJourney

New HS Study alert!

A Study to Assess Disease Activity and Safety of Lutikizumab in Adult and Adolescent Participants With Moderate to Severe Hidradenitis Suppurativa (Intrepid)

This is not run or endorsed by Hidradenitis Suppurativa Australia. Please contact Veracity for any questions.

https://clinicaltrials.gov/study/NCT06468228?term=M20-465&rank=1

HAPPY 2025!!!

First meeting of the year coming up and it is set to be a cracker with heaps of new information about events this year and great opportunities to share your story. Come along, if you are new, be sure to message the page for the link to the zoom. You don't have to have cameras on and they are not recorded so this is a safe place to chat, vent and get support.

#HSWarrior #HidradenitisAwareness #EndHSStigma #HSConnect #HSVoices #HSAustralia #beautifyHS #HidradenitisSuppurativaAustralia #HSsupport

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HS Australia is a registered charity with the Australian Charities and Not-for-profits Commission.

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Supporters

Thank you to Fresh Promotions for their support of Hidradenitis Suppurativa Australia.

https://www.freshpromotions.com.au/

With over 10,000 custom branded promotional items available Fresh Promotions has Australia's largest online promotional products range. They have supplied us with amazing promotional material

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Ways We Help

Hidradenitis Suppurativa Australia is the first and only not for profit organisation focused on HS. We will work to raise awareness, improve diagnosis rates and support those living with HS through various initiatives.

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Awareness

The exact cause is not yet known or understood which contributes to the low rates of diagnosis and delays in diagnosis and misdiagnosis. HS impacts 1-4% of men and women around the globe but due to misdiagnosis and delays in this process, that number is believed to be much higher. Because not much is known about what causes it, HS is often misdiagnosed as other skin complaints.

There are lots of myths out there that we will help bust and increase correct information so that people can understand the condition. Hidradenitis Suppurativa is considered a progressive disease meaning it can worsen over time so getting in contact with a dermatologist is important. Hidradenitis Suppurativa Australia aims to simplify that process and help more people get their diagnosis sooner.

Support HS Australia

Hidradenitis Suppurativa Australia depends on your support in order to promote real change on the ground and in local communities.

If you require a receipt please make sure you use the contact tab below to send an email.

Thank you for your support

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HS Awareness Week

June 2-8 2025

HS awareness week runs from the first Monday in June each year. This year we are hosting walks in WA, QLD and VIC!

Locations across the country will also light up purple for HS Awareness week. Keep an eye on socials for those details.

The celebration might be small but the message is a big one. Illuminate for HS and bring it out of the darkness.

Illuminate for HS 2025

To celebrate HS Awareness Week 2025 the following landmarks across the country will light up purple.
Stay tuned to our social media for updated locations!

Story Bridge, Queensland

Matagarup Bridge, Western Australia

Bolte Bridge Victoria

Queensland Parliament, Brisbane

Sir Leo Hielscher Bridges, Queensland

Sky Ribbon, Western Australia

Suncorp Stadium, Queensland

Logan Water Towers, Queensland

Mount Street Bridge, Western Australia

and MORE!!

If you would like to head over and take some pictures we would love to see them. Post to your social media and tag @hidradenitissuppurativaaus

Don’t forget the hashtags! #Illuminate4HS

#HSA

#HSAustralia

HS Support Meeting

Our monthly support meeting is during HS Awareness week 2025. Friday June 6, 5pm QLD time join us on zoom!

Hidradenitis Suppurativa Support Network is a FREE support group for people with HS.

If you are waiting for a diagnosis, starting treatment or a long time HS warrior, you are welcome to join

Check out social media for our special in-person meeting on Saturday June 7 in Redlands. Numbers are limited so RSVP!

HS Awareness Week

6-12 June 2022

HS awareness week runs from the first Monday in June each year. This is the first year of celebration in Australia from the 6th-12th June!

Suncorp Stadium will be illuminated purple on June 9!

Queensland Parliament House will be illuminated purple on June 12 to mark the end of HS Awareness week 2022.

Whangarei Victoria Canopy Bridge New Zealand will glow purple on June 12.

The celebration might be small but the message is a big one. Illuminate for HS and bring it out of the darkness.

If you have ideas for our bigger celebration planned for 2023 please get in touch.

Illuminate for HS 2022

HS awareness week is the chance to increase awareness on a larger scale, correct myths and promote education and support. It is a time to reflect on the impact this condition has on the everyday lives of people living with and help them go from surviving to thriving.

To celebrate HS Awareness Week 2022 the Cleveland Lighthouse will be illuminated purple from June 6th- 12th.

If you would like to head over and take some pictures we would love to see them. Post to your social media and tag @hidradenitissuppurativaaus

Don’t forget the hashtags! #Illuminate4HS

#HSA

#HSAustralia

Hidradenitis Suppurativa Support Network

HSSN is the name of the support group established by Hidradenitis Suppurativa Australia that meets virtually to allow those living with HS a place to safely connect with other warriors

Hidradenitis Suppurativa Support Network is a FREE support group for people with HS.

If you are waiting for a diagnosis, starting treatment or a long time HS warrior, please join us on the first Friday of every month at 5pm AEST.

Contact the Instagram page or website for link to join and connect with other warriors

HS Week 2023

The Focus of Our Efforts

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Illuminate4HS

Bringing HS out of the dark and into the purple light around the country

Australian Landmarks lighting up purple for people to notice them and help start the conversation of what HS is, how it impacts people and how they can help spread the word to get change happening.
From WA to QLD, Illuminate4HS!

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Advocacy

Making Change Possible

Meeting with policy makers and politicians to advocate for change and make them aware of the impact HS has on people who live with it is at the heart of our advocacy work.

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Education

Starting From the Bottom

Hidradenitis Suppurativa Australia is dedicated to putting our community first. We are doing that by working with educational facilities to really help upcoming students and medical professionals to understand the challenges of living with HS. This approach is aimed at stopping the medical barriers from the start.

Learn More

HS Awareness Week 2024

Pretty in Purple

Landmarks across Australia once again lighting up purple for HS Awareness Week 2024.
We are connecting with more people than ever before and the goal for 2024 is to go remote!

See a landmark that is purple? Snap a pic and share it with our social media sites to win! See Instagram and Facebook for more details.

Going Global!

We are going global with some amazing organisations that are dedicated to promoting patient-centric care. We are now a member of GlobalSkin and this is just another

The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is a unique global alliance, committed to improving the lives of patients worldwide. We nurture relationships with members, partners and all involved in healthcare - building dialogue with decision-makers around the globe to promote patient-centric healthcare. GlobalSkin's work is founded on three pillars: research, advocacy and support.

Connect with us

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HS in the News

https://www.abc.net.au/news/2024-05-02/hidradenitis-suppurativa-skin-condition-diagnosis-awareness/103790620?

ABC news did an interview about some people living with HS. Please click the link to read and share with your community.

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Hidradenitis Suppurativa

Who can diagnose HS?

Dermatologists are the doctors who specialize in the diagnosis and treatment of this condition.

A GP can be the first point of contact if you believe you have HS. They will need to write a referral to a dermatologist for definitive diagnosis.

What is HS?

Hidradenitis Suppurativa (HS) is a debilitating, chronic, complex inflammatory illness; the reason HS occurs is still being studied so we do not know for certain what causes it.

HS presents with extremely painful recurring boil-like abscesses that may start out as pustules (small, pus filled bumps/sores) that can develop anywhere hair follicles are found. It is possible to experience abscesses or lesions anywhere on our body. HS has a huge impact on the quality of life physically, mentally, socially, emotionally and financially. HS can impact anyone of any age at any point in their life

HS is not contagious. There is no cure for HS and treatments aim to control disease severity and help reduce symptoms.

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Victoria

Sinclair Dermatology

2 Wellington Parade

East Melbourne VIC 3002

Tel: +61 3 9654 2426

www.sinclairdermatology.com.au

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Hidradenitis Suppurativa Australia at a Glance

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HS Australia is a registered charity with the Australian Charities and Not-for-profits Commission.

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HS Awareness Week

June 2-8 2025

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HS Week 2023

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