Patient Stories

Epidermolysis Bullosa

Monsie

1984 – 2020

RDEB

 

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.

RDEB has a devastating health, emotional and financial burden on patients and their families. The shearing of skin can be so deep that it is equivalent to a third degree burn and there is incredible pain and itch.

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