Hidradenitis Suppurativa Australia

09/11/2025

💜 Advocacy in Action at Parliament House! 💜

What an incredibly, exciting and fulfilling few days in Canberra.
This week, our team travelled to Parliament House to meet with Ministers and Senators to raise awareness of Hidradenitis Suppurativa. And yes we even saw Shawn the Prawn!

Cannot thank our supporters enough and the incredible team at UCB, Tracey Edwards and Rupert Hugh-Jones for supporting us with getting to Parliament. We were able to bring the voices of our HS community and the challenges we face to the attention of those who can make changes. Their dedication to putting patient voices first and amplifying the HS community is incredible.

Shout out to Dr Ryan De Cruz for not only being a great clinician treating HS but an advocate for our voices. Rhys and Steph from HS Australia team spoke about the challenges faced by people living with HS every day. From delayed diagnoses, limited access to treatment, to the urgent need for better wound care, mental health support, and changes to MBS codes

These discussions were about more than highlighting issues, they were about sharing lived experiences of the HS community, creating solutions and driving meaningful change for the HS heroes in Australia. These few days in Canberra were just the beginning. Many conversations were had, and there is so much more to come. We’re committed to continuing this momentum and advocating for:

💜 Better wound care access
💜 More treatment options
💜 Reinstating MBS codes removed that relate to treatment of HS
💜 Improved education and understanding among health professionals
💜 Greater recognition of the daily impact of HS in Australia

💜 What’s next?
We’ll keep working alongside policymakers, clinicians, and advocates to make sure HS remains part of the national health conversation.

💜 How you can get involved?
Join our next advocacy workshop (this Friday Nov 14!), share your story, or reach out to learn how you can make an impact. Together, we can change the future for people living with HS.

09/11/2025

Have You Ever Wondered About HS and Pregnancy?

and (HS) is a topic many of you have talked about. Now, you have a chance to help researchers understand it better.

📢 A new study is looking for people with HS ( ) to take part, and your experience could influence what doctors, nurses, and researchers know and learn about HS.

🕒 It’s quick to take part (takes just a few minutes)
🧑‍🔬 It’s run by researchers at the University of Bristol, UK.
🧩 It focuses on something we know matters but has rarely been studied.
✅ It's open to everyone, everywhere (the questions are in English)

I’ve seen how often pregnancy and HS comes up for discussion amongst pwHS, and now we have a chance to be part of the solution.

To participate, scan the code in the image and/or visit the 🔗 in the comments.

Thank you 🙏

06/11/2025

What a whirlwind of a week!

This week we headed to Parliament House in Canberra to meet with Ministers and Senators to shine a light on Hidradenitis Suppurativa in Australia. From wound care to barriers to care and everything in between, we are advocating hard for our amazing community.

Advocacy in action is making sure the voices of people living with HS are heard at every level of government💜 We can’t do it alone and thankfully we don’t have to because we have you, the HS community behind us. We also have some fantastic support from some amazing people who joined us in Canberra. More photos to come!

Don’t forget our Advocacy Workshop is coming up next Friday 14th at 12:30PM NSW / 11:30AM QLD. Get in touch to receive the link and learn how you can help drive change.

And we’ll see you all at 5PM QLD time tonight for our November Support Meeting. It’s your safe space to connect, share, and support one another. Make sure to register for the session, it’s all FREE, we just get you to sign up to a session so we can keep spammers away and a safe place for all.

03/11/2025

We’re a little sad to miss all the incredible action at EmpowerHS this year 💜 but we’re also beyond excited to be heading to Parliament House in Canberra this week to bring HS to the Hill! Keep an eye on our socials for who will be coming with us.

While our friends gather in Nashville to empower voices across the globe, we’ll be doing the same here at home, raising awareness, building connections, and making sure the voices of Australians living with Hidradenitis Suppurativa are heard loud and clear.

Because whether it’s in Nashville or Canberra, we’re united by one purpose: to create real change for our HS community. Well done Brindley and the HS connect team for another amazing event and being hybrid so people from around the world can join. We started watching this one at 5am today so early start but amazing energy.

Together we are united in our goal for HS Awareness, across oceans, borders and barriers. Thank you to the supporters who make this possible. Thank you to everyone who has shared their photos and stories to bring with us. 💜💜💜

27/10/2025

HS FACTS!

There is a lot of misinformation about HS out there so let's clear up a few things. Remember we don't know what causes HS, there is no cure but treatments can help!

HS is NOT contagious
HS is NOT an STI
HS is NOT an STD
HS is NOT acne

HS is diagnosed by a dermatoligist
HS can be debiliating.

But most importantly- always remember that HS IS NOT your fault. You didn't cause it and you are not alone in your fight to treat it.

25/10/2025

Join us in Canberra this November

We’re heading to Parliament to put Hidradenitis Suppurativa (HS) on the national agenda and we want you with us. This is a unique opportunity to share lived experiences, meet decision-makers, and help influence real change for people living with HS in Australia.

This is your chance to share your story, connect with others, and help shape a better future for Australians living with HS. Every voice matters and together, we can make a lasting impact.

Be part of advocacy in action. Contact us via the website or our socials for details.

23/10/2025

23/10/2025

Your story could be the one that helps someone finally realise they’re not alone. Everyone’s journey with HS is different, but every story makes a difference.

We’re inviting Australians with lived experience to take part in our upcoming HS Awareness Campaign. Whether you’d like to be part of an interview, podcast, photo story, or written feature, we’d love to hear from you.

🎙️ Interviews
📸 Awareness features
🎧 Podcasts
📝 Written stories

There’s power in your experience — let’s use it for change.
📩 Get involved: hidradenitissuppurativaaustralia.com.au

15/10/2025

Hidradenitis Suppurativa (HS)

❓Have you had outbreaks of boils during the last 6 months?
If yes,
❓Have you had 2 or more in any of the following locations (highlighted in the attached picture*):

- armpits,
- groin,
- ge****ls,
- breasts, and
- other locations, such as the neck, the abdomen, or between the buttocks and ge****ls?

If yes, you may have (HS). Please visit your doctor.

Source: Vinding GR, Miller IM, Zarchi K, Ibler KS, Ellervik C, Jemec GB. The prevalence of inverse recurrent suppuration: a population-based study of possible hidradenitis suppurativa. Br J Dermatol. 2014 Apr;170(4):884-9. doi: 10.1111/bjd.12787. PMID: 24329520.


People with HS ( )


*: These are the most commonly affected areas. Note that HS can and does occur in other places on the skin, wherever there are hair follicles.

14/10/2025

National Carers Week in Australia runs from 12-18 October 2025

💜💜Carers are the quiet heroes of the Hidradenitis Suppurativa community. Behind every HS Warrior is often someone incredible, a hero and they are the hidden support. Partners, parents, friends, children are all part of the community.

They walk beside us and hold our hands through the pain, change dressings, juggle appointments, fight for better care, and give strength when it’s needed most. When HS Warriors are tired, they help pick up the fight and hold hope on the hardest days.

Caring for someone with HS isn’t easy. It can be exhausting, unpredictable, sometimes isolating, and emotionally heavy and that’s why carers deserve to be seen, supported, and celebrated. Carers for people with HS do it all from wound care, emotional support to advocacy, and love through every flare. It’s tough, messy, and often unseen work but carers show strength, love, and patience beyond measure.

To every carer, we see you and appreciate you. You are the quiet heroes in the HS story and we thank you.

Let’s give them the recognition they deserve. 💜💜