Historical Highlights on Dystonia
Continued from Issue no. 1 Vol. 5
Fifteen years later, Lee and colleagues described the phenotype of XDP as a combination of dystonia and Parkinsonism and proposed to designate the disorder as sex-linked recessive dystonia-parkinsonism (XDP) (Kupke, Lee, & muller, 1990; Lee, Kupke, Caballar-Gonzaga, Hebron-Ortiz, &Muller 1991). The coexistence of dystonia and parkinsonism in XDP was confirmed by Fhan and co workers (Fhan, 1991; Wilhelmsen et al., 1991) who introduced the term “Lubag,” which in ilongo (a visayan dialect) connotes “to twist.” Twenty-five years after the first article; the natural history of XDP has become apparent, as more cases were identified and followed in the Philippines XDP registry. Moreover, an XDP Study Group was formed not only to track the clinical course of XDP but also to forge a partnership with the local government, Health department, the Philippine Neurological association and academic medical centers, in identifying cases. A comprehensive account of the movement disorder was described in the 2001 – 2002 review (Lee, Munoz, Tan, & Reyes, 2001; Lee et al., 2002). Since then, more articles have been published on XDP (Evidente, 2005; Evidente et al., 2002; Evidente, Gwinn-Hardy, Hardy, Hernandez, & Singleton, 2002; Lew et al., 1994).
The XDP study Group has undertaken surveillance of XDP cases since the 80s. An infrastructure for identification and referral of suspected cases has been formed. Currently, cases presenting with a movement disorder along with a positive family history are referred by members of the Philippine Neurological Association to the Movement Disorders Clinics of the University and Medical Centers in metro Manila. Locally, in Panay Island, at the Roxas City Health Office, XDP cases are referred by the barangay (smallest government unit) health workers to the Dystonia Clinic of the city Health Office as part of the 1992 agreement between the Department of Health and the local government with the XDP study Group./TE
The XDP study Group has undertaken surveillance of XDP cases since the 80s. An infrastructure for identification and referral of suspected cases has been formed. Currently, cases presenting with a movement disorder along with a positive family history are referred by members of the Philippine Neurological Association to the Movement Disorders Clinics of the University and Medical Centers in metro Manila. Locally, in Panay Island, at the Roxas City Health Office, XDP cases are referred by the barangay (smallest government unit) health workers to the Dystonia Clinic of the city Health Office as part of the 1992 agreement between the Department of Health and the local government with the XDP study Group./TE
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