What is EB?
Epidermolysis Bullosa (EB) is a rare disease whereby the skin blisters and peels at the slightest touch. Living with EB has been likened to living with third degree burns. It is very painful, and sufferers must be bandaged every day with dressings to protect and medicate their wounds.
For more information check out What is EB?
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Latest News
Simone’s Story
As National Family Support Coordinator I frequently observe the strength and determination it takes to live with ‘the worst disease you’ve never heard of’. To say caring for individuals living with EB takes a lot [...]
My EB Story, by Renae
In honour of EB Awareness week, I wanted to share my story living with the condition. I was diagnosed with Epidermolysis Bullosa Simplex (Dowling Mera). Simplex is the term they use to for the mild [...]
Hayden’s EB Story, as told by Mum Kimberley
My name is Kimberley and my son Hayden (5 years old) has EB Symplex. I had never heard of EB before my son was diagnosed but I had come across the Butterfly Children a few [...]
