Objective: To determine the rates of unemployment among patients with X linked dystonia parkinsonism (XDP).

Background: X linked dystonia parkinsonism (XDP, DYT3, "Lubag") is a rare progressive, movement disorder almost exclusively found among male Filipinos. Patients initially present with disabling dystonic movements in the 3rd and 4th decade of life during the prime of the their earning years. Thus, it can lead to early retirement and significant loss of income. This manuscript seeks to quantify exactly the rate of unemployment due to symptomatic XDP, mean income loss and total aggregate income loss of the family.

Methods: A survey was conducted from August 2015 to October 2015 on all consecutive XDP patients in the province of Capiz, Roxas City, Philippines, who attended the outpatient clinic in a tertiary movement disorder clinic led by the Philippine XDP study Group. All patients gave their written informed consent to participate in the study. Basic demographic profile of patients was gathered. The income of the patients made before and after the onset of XDP was determined. Descriptive analysis was used on all data obtained.

Results: A total of 94 XDP patients were seen during the period of the study. Nineteen patients were excluded because they were over the Philippine retirement age of 60. Out of the 75 remaining patients, 67 (89.33%) patients were unemployed due to disabling XDP symptoms. The mean pre symptomatic income of these patients was calculated to be P13,471.07 ($287.94). The mean loss in income for patients with XDP is P8,929.57 ($190.86) per month. Their current income being P4,541.49 ($97.07).

Conclusions: There is a high rate of unemployment in XDP. The disease affects men who are predominantly involved in agriculture where manual labor is the norm. An estimated loss of income as high as three times their earning capacity was computed. According to the Philippines National Economic and Development Authority, the mean income to put food on the table in Western Visayas for a family of five was P5,258 ($116.84) which means a familial income of P4,541.49 ($97.07) in the present day pushes family below the poverty rate, making it difficult to obtain enough food sustain a family. To help compensate for lost income, the development of livelihood projects for those affected with XDP and their family members may help serve as a source for supplemental income.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/early-retirement-and-loss-of-income-among-x-linked-dystonia-parkinsonism-xdp-dyt3-patients-in-capiz-roxas-city-philippines/