25/08/2025
Back in May I had the privilege of participating in a workshop at the Members’ Weekend alongside fellow EB member Sophie Burton, and Dr Kerry Montgomery and Dr Maia Thornton from the Centre for Appearance Research
Our session, “EB and Me: Navigating EB in an appearance-conscious world”, was a candid conversation about the highs, the lows, and everything in between. We explored topics like dating, confidence, and sharing our experiences of EB, while also highlighting practical strategies and resources that can really make a difference.
For me, it was a true pinch-me moment. As someone who struggled deeply during my formative years with the psychosocial implications of living with EB, to now be speaking with others who have a lived experience, and see the potential these conversations can have was nothing short of transformative. This conversation reminded me of the power of community, honesty, and shared voices 🦋
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