In our February Virtual Education Session, guest Speaker Dr Brett Thombs joined us to talk about ‘Scleroderma and Mental Health’. He discussed what we know about the impact rare diseases can have on mental health, how the pandemic affected people with scleroderma, and everyday ways to improve mental health.


SPIN – Helping people live better with scleroderma

Dr Thombs is the Founder and Director of the Scleroderma Patient-centred Intervention Network (SPIN). SPIN’s mission is to develop, test and distribute free educational tools to people living with scleroderma.

He talked about mental health and scleroderma, and how we can improve our mental health.

What is Mental Health?

The Australian Government’s Health website defines mental health as “a state of wellbeing that enables you to deal with what life throws at you. It is about feeling resilient, enjoying life and being able to connect with others.”

Your mental health is your ability to think, feel and act in ways that make life enjoyable. Good mental health helps you deal with challenges that come your way. You’ll enjoy relationships, partake in activities you like, and get the most out of life.

Scleroderma’s Impact on Mental Health

People with rare diseases like scleroderma face unique challenges. They may struggle to obtain an accurate diagnosis and get access to effective treatments.

In the case of scleroderma, people may have never heard of the condition before they’re diagnosed with it. There’s not as much support out there for people with rare diseases, compared to more common diseases. This can leave people with rare diseases feeling helpless, anxious and alone. Many GPs don’t know much about scleroderma, which can lead to further feelings of isolation and hopelessness.

Scleroderma, Mental Health & the Covid-19 Pandemic

According to Dr Thombs, the pandemic saw an increase in anxiety amongst people with scleroderma.  These people were “fearful they could be infected and have severe complications or death, that they might not be able to access necessary health care, and that they might need to be isolated for long periods of time owing to their vulnerability.” Luckily, there are things we can do each day to encourage good mental health.

Everyday Ways To Improve Mental Health

  • Find a trusted source of information about scleroderma. Dr Brett Thombs suggests starting with your state scleroderma association. Johns Hopkins University’s Scleroderma Centre also has lots of helpful information.
  • Limit your engagement with news if you find it stressful or upsetting.
  • Focus on the positive things in your life as much as you can and try to make time to do things you enjoy.
  • Moving your body is great for mental health, but exercise can be hard for people with scleroderma. Walking, swimming, yoga and water aerobics are great low-impact activities.
  • Get outside. Even a short walk can do wonders for your mood. Being outdoors reduces anxiety and increases feelings of well-being.
  • Prioritise spending time with others, even if that means via Facetime or Skype. If you live alone, schedule calls or meetups ahead of time so you’ve got things to look forward to throughout your week.