Patient and caregiver stories
Real Stories
You are not alone. In this collection of stories, real patients and carers share their experiences with scleroderma.
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.
More stories
No one expects to develop scleroderma. Doris focuses on the importance of concentrating on the present, instead of the unknown.
Scleroderma did not stop Jessica from achieving her goals. She pursued her dreams regardless of the diagnosis.
Symptoms of scleroderma can feel frustrating and unfair. Alex talks about how she overcame this and now looks for joy in everyday life.
A positive mindset can help you overcome some obstacles of scleroderma. Maria talks about the importance of changing your outlook.
Symptoms effect everyone differently. Lorraine is able to live an active lifestyle and has continued teaching exercise classes, despite her diagnosis.
Anna talks about how she has adapted her life to continue to be able to do the things she loves, despite her symptoms.
Scleroderma can feel like the most important issue in your life. Here, Grazia explains how she overcame her fear to concentrate on her family.
Having a safe space can help with the stress of managing scleroderma. Rute discusses her love for the beach and the calm that it brings.
Scleroderma may mean you can no longer do some of the things you enjoy. Monica describes how she's learnt to love new things.
Despite her diagnosis, Teresa continues to travel and share new experiences with the people she cares about.
Joep looks for solutions in life. Using 3D printing, he creates tools that lessen the impact of scleroderma on his everyday life.
Danièle has lived with scleroderma for 22 years. She continues to find happiness in simple everyday pleasures and the company of friends.
Michael relocated with his wife and dogs following his diagnosis. He explains how living in the moment has helped him to find happiness.
Loved ones' stories
Below, loved ones share their advice on how they offer practical and emotional support.
More stories
Eszter doesn’t let scleroderma affect the way she sees her sister Anna, instead her enthusiasm inspires her.
When a loved one has scleroderma, your own wellbeing can feel less important. Sabine reveals the steps she takes to look after herself.
Rui believes that his wife’s diagnosis has made their relationship stronger and discusses the part he plays in keeping their lives positive.
You may also like to read:
Mindfulness
Expressing yourself
