Supporting Someone with Scleroderma

Learn. Understand. Support

You’re part of their team

When someone you care about is living with scleroderma, it affects more than just them.

It can be confusing, unpredictable, and at times overwhelming, for everyone involved.

You may find yourself learning new terms, navigating medical systems, or simply trying to understand what your loved one is going through.

You don’t have to do this alone.

Scleroderma Victoria is here to support not just people with the condition, but the family, friends and carers who stand beside them.

Join our community and become part of something that makes a real difference.

Become a Member  join via Tidy HQ membership portal

Hear from our community

Families, carers and friends play a vital role in the lives of people with scleroderma.

Watch our community share their experiences, challenges and the power of connection.

Understanding scleroderma

Scleroderma (or systemic sclerosis) is a rare autoimmune condition that causes changes to the skin and can affect internal organs.

There is no cure, and the condition varies widely from person to person.

People may experience:

  • Fatigue that can be overwhelming and unpredictable
  • Pain and stiffness in joints and muscles
  • Digestive issues such as reflux or difficulty swallowing
  • Skin tightening, ulcers, or sensitivity
  • Raynaud’s phenomenon (painful circulation issues in hands and feet)
  • In some cases, involvement of the lungs, heart or kidneys

Some people live relatively active lives, while others face significant daily challenges.

There is no single “scleroderma experience”. Which is why informed, compassionate support matters so much.

Why join as a family member or friend?

Supporting someone with a chronic condition is deeply meaningful. But it can also be isolating, uncertain and emotionally demanding.

Membership gives you knowledge, connection and confidence.

As a member of Scleroderma Victoria, you will:

Understand the condition more deeply
 Feel more confident in how you support your loved one

Access trusted information and updates
 Stay informed about treatments, research and practical advice

Connect with others who understand
 Meet families, carers and friends walking a similar path

Support your loved one in meaningful ways
 Attend events together, share information, and build connection

Be part of advocacy and awareness
 Help improve outcomes for people living with scleroderma

Show your support in a practical way
 Membership is a simple but powerful way to stand alongside your loved one

You are already part of their support system, membership connects you to a wider one.

Become a Member

How you can support someone with scleroderma

Supporting someone doesn’t mean taking over.
It means listening, adapting, and walking alongside them.

Everyday support

  • Be patient and follow their lead
  • Understand that symptoms may be invisible and unpredictable
  • Help create warm, comfortable environments (cold can trigger pain)

Practical support

  • Offer help with appointments or transport
  • Assist with planning or preparing for medical visits
  • Support routines that help manage symptoms

Emotional support

  • Listen without trying to “fix” everything
  • Acknowledge fatigue, pain and uncertainty
  • Be flexible. Plans may need to change

Your support helps them feel understood, respected and less alone.

Support for carers and family members

Caring for someone with a chronic illness can be challenging.

It’s important to look after your own wellbeing too.

We’ve gathered a range of resources to support you:

Whether you’re a partner, parent, sibling, friend or carer, your role matters.