Welcome to Episode 7 of Live & Learn. In this conversation Megan Gilmour welcomes Sophie Peel who discusses the challenges of living with Fabry disease. Sophie has lived experience of Fabry and is a volunteer committee member for Fabry Australia. Sophie talks about Fabry’s effects on school attendance, social life, and mental health, and stresses the need for early diagnosis and empathetic support in schools. She highlights the importance of advocacy, community, and including lived experiences in education to better support students with complex health needs.
Fabry Australia is patient-run non-profit organisation that has been uniting and supporting the Australian Fabry community since 1994. Fabry disease is a rare genetic condition causing the buildup of a specific fat in cells, leading to pain, skin lesions, reduced sweating, and complications affecting the heart, kidneys, and other organs. There are currently around 500 people diagnosed in Australia, though it’s likely that many more people are living with this disease and are undiagnosed, and some may even be misdiagnosed.
Read the transcript here.
