Epidermolysis bullosa (EB) impacts the skin and other organ systems, and the management of affected patients is complex and requires coordinated care. Severe EB simplex, junctional EB, and recessive dystrophic EB are effectively multisystem disorders affecting the epithelia and other organ systems with a range of complications. This article describes our center's approach to providing a comprehensive, holistic, and patient-centered approach to care of patients with EB in our multidisciplinary EB clinic. Teams from dermatology, pediatrics, occupational and physical therapy, nutrition, social work, and pain psychology work collaboratively to manage the cutaneous, extracutaneous, and psychosocial needs of these patients.
Feinstein et al. (Tue,) studied this question.