Notes
† The maxillofacial surgeon working at Pediatric Hospital II (see below) told the treating team that adult patients with Ehlers-Danlos syndrome with involvement of the jaw had an especially poor prognosis. The surgeon, Prof. Geoff McKellar, personally remembered three such patients who had suicided because they were unable to manage the intensity of the mandibular pain or because surgical attempts to relieve their symptoms had failed (the muscles of the mandible are so strong that all man-made interventions are simply “ripped off”).
* The clinic was established in 1989 to provide multi-specialist and multidisciplinary care to children with heritable disorders of connective tissues, including osteogenesis imperfecta, skeletal dysplasias, Marfan's syndrome and related disorders, and Ehlers-Danlos syndrome. It is staffed by a rehabilitation physician, geneticist, bone and mineral medicine physician, physiotherapist, and occupational therapist.
† Only the rehabilitation specialist was part of the Connective Tissue Clinic. The pain physician was a member of the hospital's pain team. The psychiatrist was a member of the hospital's Department of Psychological Medicine, an overarching department that includes psychiatrists, psychologists, and social workers. The psychiatrist herself was participating in this case as head of one of the department's three teams in consultation-liaison psychiatry.
* The case history (both parts) was prepared by Joceline A. Branson.