Welcome to Episode 29 of Live & Learn. Megan Gilmour chats with Simone Baird, National Family Support Coordinator at DEBRA Australia about her family’s experience with Epidermolysis Bullosa (EB) after her daughter Eliza’s diagnosis. Simone discusses the challenges of daily care, sibling impacts, and school misconceptions, while highlighting the need for inclusive education and strong support networks.
EB is a rare genetic skin condition that causes fragile skin and painful blistering, often compared to severe burns. There is no cure, only treatments to ease symptoms and support wellbeing. DEBRA Australia supports families through nursing programs, counselling, advocacy, and research.
Read transcript here.
