Epidermolysis bullosa

In people affected by the different types and subtypes of epidermolysis bullosa (EB), pain can be present punctually or in a sustained manner over time. Although each case is very different (depending on the type of EB, age of the patient, number of present complications, life moment, emotional situation, etc.) and not the same kind of pain must happen to all people at the same moment, the day-to-day life of people with EB can include different situations susceptible to cause pain. Some of the pain sources could be: bath, change of dressing and bandages, complicated wounds, constipation, swallowing difficulties, heartburn, clinical interventions (blood extractions, wounds debriding, etc.), pain when walking or moving of the joints. 

 

As pain is a symptom present in a higher or lower degree in the life of people with EB and is highly related to their quality of life and their families, in this chapter will dive deeper on the concept of pain and its management.