The blistering and shearing of skin causes the person with EB to experience pain at the site of the injury. This type of pain, directly related to damage, is called nociceptive pain. Poorly controlled pain of this type, if it persists, can lead to changes in the transmission of pain within the central nervous system, which can lead to a heightened sensitivity to stimuli that cause pain (hyperalgesia) and can even lead to a situation where stimuli that should not be painful cause pain (allodynia). This process is called central sensitisation. Nociceptive pain from tissue damage often responds well to relatively simple pain killers, such a paracetamol, but once sensitisation has occurred the pain responds less well to medication. The early recognition of pain and good treatment reduces the risk of central sensitisation.

Anecdotal reports suggest that people with EB also experience other sorts of pain. Neuropathic pain arises from damage to nerves or to the central nervous system and musculoskeletal pain arises from the changes in posture made to escape the pain of blistered feet. In summary, pain in EB is complex, requires thorough assessment and may require more than one type of treatment.

Previous research in this area has established that the majority of people with EB have pain. However, the research has not described the type(s) of pain experienced, nor has it addressed their perception of the treatment that they have received for their pain. The first step in improving pain management for people with EB is to properly describe the suffering experienced. In this descriptive study, people with EB will be asked to describe their pain and their experience of pain treatment.

The information gained from this study will be used as the basis for further research and it is anticipated that the publication of the results will improve awareness of pain problems in EB and potential solutions to these.

FINANCIAL SUMMARY