Mental Health and OI
For many across the rare disease community, not being understood can be as painful as the condition itself, impacting mental health and leaving people feeling invisible.
This is why EURORDIS launched the EURORDIS Mental Health & Wellbeing Partnership Network. Both Alessandra Tolaccia and Rebecca T. Skarberg from OIFE have been part of the network.
In conversation with Matt Bolz-Johnson, who is the Mental Health Lead at EURORDIS, Alessandra Tolaccia (photo) shares her journey of living with Osteogenesis Imperfecta (OI) Type 1. Despite decades of unexplained fractures and chronic pain, she was dismissed by specialists and told it was all in her head. But she refused to accept silence.
“If we want the world to take our condition seriously, we have to speak, and I’ll keep speaking until someone listens.”
Matt Bolz-Johnson was also an invited speaker at OIFE’s Oslo conference to cover the topic of mental health and quality of life in OI. And you can read his impressions here.
In 2024 EURORDIS published a position paper on mental health & wellbeing. You can download it by clicking on the photo below.
