254. The Worst Disease You’ve Never Heard Of – Inside EB with Simone Baird

In this week’s episode of the Kofkin Bond Podcast,  Dimi and Tony sit down with Simone Baird, the dedicated Family and Support Coordinator at DEBRA Australia, for an emotional and eye-opening conversation about Epidermolysis Bullosa (EB), a rare, debilitating, and often life-threatening genetic skin disorder. Commonly referred to as “the worst disease you’ve never heard of.”

Simone courageously shares the deeply personal story of her beloved daughter Eliza, who was born with EB. From the moment of Eliza’s birth, their lives changed forever, and Simone takes listeners through the heartbreaking reality of living with a child affected by this cruel condition

Simone talks about how DEBRA Australia has stood beside Simone’s family like a lifeline, offering critical services including psychological support, in-home nursing care, and financial aid for the overwhelming costs that EB families often face. DEBRA’s support extends beyond just clinical care, they provide hope, community, and a sense of not being alone in the fight. Simone urges listeners to learn more about EB, share the stories of those affected, and support the vital work of DEBRA Australia in their mission to improve the quality of life for individuals and families living with this devastating condition.