Mandy and her mum

Patient and caregiver stories

stories · mins

Patient stories

Hearing how other people have managed can be a source of reassurance and relief—it can feel good to know you’re not the only one feeling this way. Their experiences, their triumphs and even their mistakes can help you find your own way forward.

  • Mandy

    Close up photo of Mandy

    Staying positive can be difficult, but Mandy uses craft and creativity to continue to stay optimistic.

  • Susan

    Susan, a scleroderma patient
    "I've embraced all the different things that you can get to help you."
  • Mike

    scleroderma patient experience

    It’s easy to be fearful in the face of disease, but Mike and his wife, Alison, are an inspiring example of how you can lean on each other.

Loved ones' stories

Below, loved ones share their advice on how they offer practical and emotional support.

  • Alessandro

    Alessandro close up portrait shot

    Caring for a parent can be difficult at any age. Alessandro discusses his mother’s strength in the face of this rare disease.

  • Juan

    Juan smiling meanwhile in a vehicle
    "She's a loving friend and wife. She fills me with warmth every time I see her, she's the love of my life."
  • Sabine


    When a loved one has scleroderma, your own wellbeing can feel less important. Sabine reveals the steps she takes to look after herself.