Hidradenitis Suppurativa Australia

Hidradenitis Suppurativa Australia Hidradenitis Suppurativa Australia is committed to helping to raise awareness and support of Hidradenitis Suppurativa in Australia.

Hidradenitis Suppurativa Australia is an Australian non-profit organisation dedicated to improving the lives of those living with HS through support and advocacy. We run support groups for people undergoing treatment and those awaiting diagnosis of HS on the first Friday of every month. A host of other activities and events will be happening around the country to raise awareness, make connections

and increase education about HS. In 2022, the Cleveland lighthouse and a number of landmarks were illuminated purple in support of HS Awareness week 2022.

04/09/2026

Adalimumab is used for nine conditions in Australia, yet PBS access for each depends on different (and sometimes outdated) rules. Help us get all conditions included in a single common framework.

04/09/2026

💜 HAVE YOUR SAY: PBAC Submissions OPEN💜

If you are living with Hidradenitis Suppurativa, are a carer or health professionals you are invited to have a say on an important proposal being considered by the Pharmaceutical Benefits Advisory Committee (PBAC).

The PBAC is considering whether appropriately qualified Nurse Practitioners (NPs) should be able to prescribe secukinumab (Cosentyx) under the PBS for eligible people living with HS.

Why is this important?

For many Australians with HS, accessing specialist care can involve:
💜 Long waiting times
💜 Expensive specialist appointments
💜 Significant travel
💜 Limited access to dermatologists, particularly in regional and rural areas
💜 Delays maintaining access to treatment

If approved, this change could improve access to treatment and ongoing care for eligible people with HS.

Importantly, this would not change the existing PBS eligibility criteria for secukinumab. The proposal is about potentially expanding who can prescribe it for eligible patients.

YOUR VOICE MATTERS

Have you experienced difficulty accessing a dermatologist? Long waiting periods? High costs? Travel barriers? Challenges maintaining your treatment?
Your lived experience can help decision-makers understand what accessing HS care really looks like in Australia.

💜 💜 TWO WAYS TO HAVE YOUR SAY 💜 💜

💜 Through HS Australia
We are collecting community experiences for a combined submission to PBAC.
Closes 5 pm Friday, 11 September 2026 and you can email: [email protected]

💜 Make your own submission directly to PBAC
You can make an individual submission.
Direct submissions close 16 September 2026
👉 https://ohta-consultations.health.gov.au/ohta/pbac-november-2026

💜 Whether you support the proposal, have concerns, or simply want to share your experience accessing HS treatment — your voice deserves to be heard.
Please consider making a submission and helping shape the future of HS treatment access in Australia.

08/08/2026

💜 HS FACTS 💜

Hidradenitis Suppurativa is much more than skin deep. It's a chronic inflammatory skin disease that affects millions of people worldwide and yet there are lots of myths out there so here are some more HS Facts.

💜 Comfortable clothing can help with flares. Loose, breathable fabrics can reduce friction and irritation in affected areas. Everyone's skin is different, so finding clothing that keeps you comfortable is an important part of managing HS.

💜 Everyone's HS looks different. Some people have occasional nodules, some people have large flares and others have relatively minimal external symptoms with deep tunnelling. Everyone is impacted by some level of chronic pain, drainage, tunnels beneath the skin and scarring. No two journeys are the same, and every person's experience is valid.

💜 HS affects around 1–4% of people worldwide. Despite being relatively common,
many people have never heard of it.

💜 HS is often misdiagnosed. It is frequently mistaken for boils, ingrown hairs, infections or cysts. Many people wait years before receiving the correct diagnosis, delaying access to effective care.

💜 You did NOT cause your HS. HS is not caused by poor hygiene, it is not contagious, and it is not your fault. Living with stigma can be just as challenging as living with the disease itself, so let's replace judgement with understanding.

💜 You can ask for workplace accommodations. HS can make sitting, standing, walking and even wearing certain clothing difficult during flares. Flexible work arrangements, medical appointments, working from home or other reasonable adjustments may help you continue doing your job while managing your condition.

Every conversation helps raise awareness, challenge misconceptions and remind people living with HS that they are not alone.

Together, we can build a future where HS is recognised sooner, understood better and treated with the seriousness it deserves.

💜 Share these facts to help spread awareness and support everyone living with Hidradenitis Suppurativa.

Rosette is completing the Masters of Mental Health Art Therapy degree.As part of their Masters by coursework degree, th...
23/07/2026

Rosette is completing the Masters of Mental Health Art Therapy degree.

As part of their Masters by coursework degree, they will be conducting a single-case study research thesis, and looking to recruit a study participant who meets the study criteria.

The research title is: The effect of art therapy on the quality of life in adults with Hidradenitis Suppurativa - A single case study

The purpose of this study is to investigate the effects of art therapy on the quality of life outcomes in adults with Hurley Stage 1 Hidradenitis Suppurativa (HS). Through a single-case study design, you will be invited to use art therapy to explore your lived experience of HS and the impacts it has on your quality of life.

The research project will involve a mixed-method approach. You will be asked to complete a quality of life questionnaire and engage in a semi-structured interview before and after the art therapy intervention. This will take place in week 1 and week 6. Four art therapy sessions will be facilitated during week 2 - week 5 of the study.

Eligible participants must be:
• Over 18 years old
• Diagnosed with Hurley Stage I HS
• Managed by a GP and specialist such as a dermatologist
• Proficient English-speaking
• Able to provide informed-consent
• No more than low to mild levels of depression and/or anxiety

Your time commitment to the study:
You will be required for a total of 6 hours, face-to-face in Beverly Hills, Sydney. The study will be made up of a pre and post interview, and four 1 hour art therapy sessions. The study will take place over a total of six weeks.

Participation in the study is voluntary and the participant can withdraw at any time.

This study is approved by the University of Queensland, Human Research Ethics Committee (2026/HE010669)

If you meet the criteria and are interested in receiving more information on this study, please contact the research team:

Rosette Rouhana - Lead Investigator
Student at the University of Queensland
Masters of Mental Health Art Therapy Program
e: [email protected]

Supervised by Danielle Walsh
Lead Lecturer within the Masters of Mental Health Art Therapy Program
e: [email protected]

07/07/2026

💜 World Skin Health Day 💜

Today is dedicated to raising awareness about the importance of healthy skin, improving access to dermatological care, and reminding the world that skin conditions deserve to be taken seriously.

Our skin is our body's largest organ. It protects us, regulates our temperature, helps us heal, and plays an important role in our overall health. Yet for millions of people living with chronic skin conditions, skin health is often misunderstood, underestimated, or overlooked.

For people living with Hidradenitis Suppurativa, World Skin Health Day is about so much more than skin. HS is a chronic, painful inflammatory disease that impacts every aspect of a persons life. It is so misunderstood and people are waiting 7-10+ years for a diagnosis.

Today is so important

💜 It reminds us that skin diseases are real medical conditions and not cosmetic concerns.
💜 It highlights the need for earlier diagnosis so people can get treatment sooner
💜 It encourages greater understanding and compassion for those living with visible and invisible skin conditions.
💜 It reinforces the importance of access to dermatologists, multidisciplinary care and evidence-based treatments, no matter where someone lives.

At HS Australia, we believe everyone deserves timely diagnosis, access to appropriate care, accurate information and a community that understands. We will continue advocating for better awareness, improved access to specialist care, more treatment options, increased research and a future where no one has to suffer in silence.

Today, we also acknowledge everyone living with skin conditions across Australia and around the world. Whether your journey involves HS, eczema, psoriasis, vitiligo, acne, ichthyosis, skin cancers or another skin condition, your experiences matter, your voice matters, and your health matters.

Let's use World Skin Health Day to start conversations, challenge stigma, support one another and remind the world that healthy skin is an essential part of overall health.

💜 Happy World Skin Health Day from everyone at HS Australia.

27/06/2026

💜 💜 HS Awareness Week 2026 💜 💜

Wow. What an amazing week!!! This year's HS Awareness Week was our biggest and most exciting yet, bringing together people living with Hidradenitis Suppurativa from across Australia to raise awareness, build connections, share stories, and remind every HS Warrior that they are not alone.

Over the course of the week, HS Australia was proud to see communities, landmarks, healthcare professionals, advocates, carers, family members and supporters come together to shine a light on a condition that is still so often misunderstood and misdiagnosed.

From local parks and waterfronts to city streets and community spaces, our awareness walks brought people together to connect, laugh, share experiences and support one another. Whether you attended in person, wore purple from home, or cheered us on from social media, you helped make a difference. Massive thank you to QV who provided some amazing products for our giftpacks for attendees.

Throughout the week, we shared personal stories from people living with HS. Stories of resilience. Stories of diagnosis journeys. Stories of overcoming stigma. Stories that reminded us why awareness matters. One of the most rewarding parts of the week was seeing new friendships form. People who had never others with HS suddenly found themselves surrounded by others who truly understood.

Support doesn't always come from big gestures. Sometimes it's simply knowing someone else gets it. Every conversation helps reduce stigma and improve understanding. Awareness campaigns remain one of the most important tools for improving recognition and diagnosis of conditions like HS.

Every post shared.
Every step walked.
Every landmark lit.
Every story told.

Awareness Week may have come to an end but our work continues. Every day we continue to advocate for earlier diagnosis, better treatment access, improved support services, more education, increased research and a future where diagnosis doesn’t take 10 years.

Together, we're raising awareness.
Together, we're creating change.

Clinical trial for those living with HS. Contact The Skin Hospital, Australia for details. Clinical trials are a steppin...
27/06/2026

Clinical trial for those living with HS. Contact The Skin Hospital, Australia for details.
Clinical trials are a stepping stone to new treatment options. Make your voice count.

💜 Lived Experience to Help Shape Medical Research 💜The WEHI Consumer Program is looking for consumers, patients, carers,...
25/06/2026

💜 Lived Experience to Help Shape Medical Research 💜

The WEHI Consumer Program is looking for consumers, patients, carers, and community members who are interested in contributing their perspectives to medical research. WEHI (the Walter and Eliza Hall Institute) is one of Australia's leading medical research organisations, and their Consumer Program helps ensure that research is informed by the people it aims to serve.

Consumer involvement can include providing feedback on research projects, helping researchers understand patient priorities, and ensuring that research is relevant, accessible, and meaningful for the communities it impacts.

Your lived experience matters, and it can help shape the future of healthcare for generations to come.


To learn more about joining the Consumer Program, contact Katya Gray, Consumer Program Manager. Email: [email protected]

https://www.wehi.edu.au/research/clinical-trials/consumers-and-research/ -12

💜 You're Invited to the HS Australia Monthly Support Meeting 💜Living with Hidradenitis Suppurativa can sometimes feel ...
25/06/2026

💜 You're Invited to the HS Australia Monthly Support Meeting 💜

Living with Hidradenitis Suppurativa can sometimes feel isolating, but you don't have to navigate it alone. Join us on the first Friday of every month at 5pm AEST for our online HS Australia Support Meeting, where people affected by HS come together to connect, share experiences, learn from one another, and support each other in a welcoming and understanding environment.

If you live with HS, have a loved one with HS or are a parent or caregiver of someone with HS, you are welcome to join us.

Our meetings are a chance to:
💜 Meet others who truly understand
💜 Share experiences and practical tips
💜 Learn about resources and upcoming events
💜 Build connections and friendships within the community

There is no pressure to speak—some people join to chat, while others simply listen. Both are perfectly okay. Because sometimes the most powerful thing is knowing there are people who understand exactly what you're going through.

💜 Meetings are held via Zoom
💜 Register once and attend any future meetings

Registration helps us keep our community safe and secure by reducing the risk of scammers and ensuring our meetings remain a supportive space for those who genuinely want to connect. Become part of a growing community that supports, uplifts, and advocates for one another.

Connection. Community. Understanding. Hope.
💜

💜 Thank You, Australia 💜As HS Awareness Week comes to a close, we're incredibly grateful to every landmark, organisation...
06/06/2026

💜 Thank You, Australia 💜

As HS Awareness Week comes to a close, we're incredibly grateful to every landmark, organisation, supporter, volunteer, healthcare professional, advocate, and community member who helped light up the country purple.

Every photo shared, every conversation started, and every purple light has helped bring greater awareness to Hidradenitis Suppurativa.

Together, we've made HS a little more visible. Thank you for helping us shine a light on HS. 💜

The week may be ending but the work continues all year. Keep connected for upcoming events, workshops and opportunities to help create change in the HS community.

Remember our scavenger hunt continues all June so get creating, exploring and finding those purple items.

Hunt

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Redland Bay, QLD

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