Living Life with RDEB
Geovanna and Noelle live on opposite sides of the world but they share a similar life filled with courage in the face of debilitating pain. This is a story of hope and resilience among families living with RDEB.
1984 – 2020
Monsie was born with RDEB and adapted to her condition with a remarkably optimistic candor during her lifetime. At 17, she met Justin, who had educated himself about the condition—an important factor as the two began a lasting friendship-turned-relationship and eventually married. Sadly, Monsie succumbed to Squamous Cell Carcinoma in 2020. She was a strong advocate for herself and other people living with EB, and her determination lives on in those she touched during her far too brief lifetime. Read on to learn more about Monsie’s brave journey.