Episode 20: The National Epidermolysis Bullosa Dressing Scheme
In this episode
Epidermolysis Bullosa (or EB) is a rare disease characterized by fragile and blistering skin which requires the frequent application of dressings to repair and protect wounds. It is estimated that there are around 1,000 people in Australia who have some form of EB and over 500,000 worldwide.
In this episode of Inform, we are talking with Rebecca Saad about the National Epidermolysis Bullosa Dressing Scheme. NEBDS is a government funded scheme which supports people with EB by providing affordable access to specialized bandages and dressings. Rebecca will take us through the scheme and provide us with some insights on what it means to be a clinician nurse supporting people with a rare disease.
“People who have EB are missing one of the genes in one of the layers of the skin. There’s many genes involved. They’re holding all the different layers of the skin together and they’re important just to bring elasticity and allowing any type of frictional movement on the outside of your skin.”
Recognising the critical need to support people with this rare disease, the Government established the NEBS and Rebecca Saad talks about how it works
“We can help to reduce the financial burden of accessing wound care. But we can also help to reduce the burden of trying to find EB appropriate wound care.”
A financial support scheme, the NEBDS also helps families step away from educating everyone and allows them to focus on being parents, family, friends and partners.
You can find a transcript of this episode here:
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Host and producer: Samsara Dunston
Managing editor: Alison Crowe
Our thanks to Rebecca Saad
This episode of Inform was recorded and produced on the lands of the Wurundjeri people of the Kulin nation. We pay our respects to elders past and present.