Children with RDEB live life with constant pain in everything they do: from waking up in the morning to going to bed at night, walking, eating, playing, writing (taking off a pen lid can be painful) and sleeping.
Participation in sport is impossible as is simple rough and tumble with peers, leading to feelings of exclusion and isolation. They often experience anxiety as they become aware of people staring.
Visit our EB Resources page if you or someone you know is living with EB.