Our Scleroderma support groups are invaluable to many of our Scleroderma Victoria members.

But if you’ve never been to a support group before, you might be wondering what actually goes on in one.

In this Q&A, we answer some common questions about Scleroderma support groups to help you decide whether you want to join.

What is a support group?

Our scleroderma support groups are a resource for people with scleroderma, as well as their families and friends.

These groups allow the scleroderma community to get together to share their knowledge and lived experiences with one another.

Depending on the severity of your illness, you can use them in addition to clinical services or as a standalone support.

Our scleroderma Victoria support groups are not based on any psychiatric model and do not provide medical care or counselling services.

What are meetings like?

One of the best things about being involved in a support group is connecting with other people who also have the lived experience of scleroderma. The connection and mutual understanding you get in this space is unlike anything else.

At a meeting, you and your fellow members can chat informally or join a program. Often, conversations involve sharing experiences and growing your knowledge about the disease. Many people gain new insights, supports and inspiration from hearing others’ experiences.

By attending support group meetings, you add a community of likeminded people to your personal resources. This helps you feel empowered and in control of your own wellness.

Are there benefits of joining a support group?

Your involvement in a support group is what you make of it as you connect with others, share knowledge, and empower yourself.

Many of our members report the following benefits:

  • Increased self-esteem
  • Better decision-making skills
  • Improved confidence and social skills
  • Less isolation and loneliness
  • Greater strength through community ties
  • Authentic connections and friendships
  • Greater sense of social, mental, physical and spiritual wellbeing
  • Less stress
  • More knowledge of skills, treatments and tools

What types of support groups do you have?

At scleroderma Victoria, we have three main types of support groups:

1 Social support groups: groups that do coffee catchups for casual chats.

2 Support groups: groups that have structured meetings and sometimes guest speakers.

3 Virtual education sessions: educational sessions where you listen to a scleroderma expert speak about the disease and learn more about your self-care.

Who is the support group leader?

Leaders are friendly and approachable Scleroderma Victoria members. Just like the other group members, the leaders are people with scleroderma.

Support group leaders are also role models who have come to terms with their own condition. They’re in a position to help other members become confident and empowered to better manage their health.

Does it cost anything to join?

Joining a support group is free, but you first need to join Scleroderma Victoria. The annual cost to join Scleroderma Victoria is $30 full fare, or $15 concession.

If you meet with a social support group at a pub or a café, you may choose to buy yourself a drink or a meal.

Virtual information sessions are usually free for members or have a small fee.

How do I join a support group?

First, if you haven’t yet, join Scleroderma Victoria.

Next, go to our support page to find your closest local Scleroderma Victoria support group. We have support groups across Melbourne and regional Victoria. Simply contact the support group leader and enquire about joining the next catchup.