Caregiver support

You are not alone, there are great support services out there. The key is to find what works for you and the person you care for.

2 min read

Maria with her daughter
75 % of UK caregivers
surveyed said they felt unprepared for their caring role.1

Connecting with other caregivers

Sharing experiences with someone who understands you can be very helpful. You could find support from:

  • Regional, national, or international support organisations, who often provide support via their websites or organise meet-ups. Ask the doctor or nurse for information or someone to contact.

  • Clinics that specialise in treating scleroderma. They may have support groups or meetings for caregivers.

  • Advice helplines run by several caregiver organisations. They can be a great place to get one-to-one advice.

  • Caregiver conferences. Search online or ask the doctor/nurse for information on any conferences near you.

  • Online support forums that offer more personalised, real-life discussion. Those related to connective tissue diseases are most relevant for scleroderma.

  • Groups for caregivers, or those talking about scleroderma on social media, like Facebook or Twitter. These can be a great source of uplifting and motivational messages.

If you know other caregivers, perhaps consider setting up your own support network. You could use messaging apps to create group conversations to share tips and support. Just be careful when disclosing any personal details online.

Extra resources

You might be able to get extra financial, practical or emotional support.

Check with:

  • Your local government.
  • National and regional charities.
  • The relevant doctor or nurse.