As you may have seen on our website or heard from speaking to us at various events and conferences, an important part of the SPIN online toolkits we are developing will be video testimonials from people living with scleroderma. SPIN strongly believes that individuals living with scleroderma are the best resource to help others live better with the disease. As such, our online interventions will also act as a platform to enable participants to learn from each other. Here are some examples of testimonials we filmed last summer, with Amy Gietzen (Scleroderma National Patient Education Conference, in New Orleans, USA) and Geneviève Guillot (Scleroderma Canada Annual National Conference, in Montréal, Qc, Canada), sharing their experiences with diagnosis in English and French!
Here is Amy discussing her initial diagnosis, adaptations that she has made to cope with her symptoms, and how she keeps a positive attitude! (English)
Everyone’s experience of scleroderma is unique, here is Geneviève discussing her early symptoms and diagnosis. (French)