The incredible fragility of RDEB skin means that head to foot bandaging is required to protect undamaged skin and to dress wounded and blistered areas. The skin has to be checked for new blisters and damage on a daily basis. Blisters have to be pricked with needles to stop them growing. This can take many hours per day.
Blistering of the mouth and tongue make eating painful. Food has to be soft and is usually pureed. Many children and adults are fed via a gastrostomy tube to allow adequate nutrition.
The genetic defect extends to the eye, meaning the protective cornea can be sheared off leaving the eye vulnerable to UV light. The intense pain that this causes leads to a sufferer closing his/her eyes, rendering them temporarily blind till healing occurs.
Regular hospital visits are necessary to check eyes, teeth and nutrition. There are blood tests to check for anaemia, x-rays and dexa scans to check bone density, and echocardiography to check cardiac function.
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.