Scleroderma Victoria

💛 One emoji, one message of warmth and support for a scleroderma warrior 🌻🧣

📅 Save the Date - Gene Swinstead Memorial Luncheon

We're honoured to rename this much-loved event in memory of our dear friend and past President, Gene Swinstead, who led this luncheon with passion and heart for eight wonderful years.

Gene held this day close to his heart, and we're proud to come together to celebrate his legacy while raising vital funds and awareness for Scleroderma Victoria.

🍽️ Join us for a relaxed sit-down lunch featuring a delicious two-course meal, with beer and wine included - all for $90 per person.

WHEN: Sunday, 28 June, 11:30am - 3:00pm
WHERE: The London Tavern Hotel, 238 Lennox Street, Richmond VIC 3121

Come along for a meaningful afternoon of remembrance, community and impact.

Get your tickets today! Check out the link in the comment section.

Winter is here, and for people living with scleroderma, staying warm is more than comfort. Cold temperatures can trigger Raynaud's phenomenon, joint stiffness, and breathing difficulties. That's why this June, we're asking Australia to Snuggle Up for Scleroderma. 🧣

This June, as we mark Scleroderma Awareness Month, Scleroderma Australia's Snuggle Up campaign is back in the lead-up to World Scleroderma Day on 29 June, raising vital funds to support dedicated scleroderma nurses across Australia.

These nurses are a lifeline -providing expert care, education, and ongoing support to help people manage their condition with confidence and compassion.

Here’s how you can Snuggle Up & support:
🛏 Host a slumber party in your comfiest PJs
🎬 Plan a cosy movie night with friends
🍰 Throw a scarf-and-gloves afternoon tea
👕 Run a casual clothes day at work

Just $1 a day can help bring warmth, comfort, and specialist care to those who need it most!

REMINDER that our June Virtual Education Session with Dr Charmaine Jones is TOMORROW, at 10:30 AM AEST via Google Meet, where we'll be discussing Scleroderma: My Pain Assessment Communication!

In this session, Dr Charmaine will explore why traditional 1–10 pain scales often fail to reflect the lived reality of chronic pain and introduce the My Pain Assessment Communication Tool (MPaCT), a patient-led innovation designed to transform the way people communicate their pain experiences.

You'll gain insight into how MPaCT can help communicate the impact of pain on daily life, work, sleep, mood, and relationships, while supporting clearer conversations and better shared decision-making with healthcare providers.

Secure your seat today and see you there! Link in the comments.

💛 If you could share one chapter of your scleroderma story, what would it be?

Living with scleroderma already brings enough challenges - and the workplace shouldn’t add to that!

At our May Virtual Education Session, employment lawyer and workplace safety advocate Fay Calderone shared expert insights on psychosocial safety in the modern workplace, particularly for people living with chronic illness, including scleroderma.

Key takeaways:
✅ Psychosocial safety means feeling safe to speak up, ask for support, and work without fear of discrimination or punishment.
✅ Workplace stress, burnout, fear, and lack of support are recognised psychosocial hazards that can impact both mental and physical health.
✅ Chronic stress can affect the body’s stress response and may contribute to fatigue, burnout, and autoimmune flare-ups.
✅ Employers have legal obligations under Australian workplace laws to provide safe environments and consider reasonable adjustments.
✅ Reasonable adjustments may include flexible work, modified workloads, ergonomic supports, and temperature considerations for Raynaud’s.
✅ Universal design and workplace flexibility benefit everyone, not just people with disability or chronic illnesses.
✅ Self-advocacy, documentation, and clear communication can support access to workplace and NDIS supports.
✅ The “CRAP” framework (Courage, Rest, Authenticity, Purpose) offers a simple reminder for sustainable wellbeing.

Check out our blog post to learn more! Link in the comment section.

June marks the start of winter, but it’s also Scleroderma Awareness Month - a time to raise awareness, share stories, and stand alongside the more than 6,000 Australians living with scleroderma.

For many people with scleroderma, the colder months bring more than just chilly mornings. Winter can worsen symptoms such as Raynaud’s phenomenon, digital ulcers, joint stiffness, and breathing difficulties, making everyday life even more challenging.

At Scleroderma Victoria, we’re committed to supporting those affected by this rare and often misunderstood condition through advocacy, education, connection, and support services. But we can’t do it without your help.

This Scleroderma Awareness Month, help us make a meaningful difference. Start a conversation, share this post, and if you can, make a donation to support our work.

Every contribution helps us continue supporting the scleroderma community.