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• W2891604778 abstract "Recent advancement in treatment of Duchenne muscular dystrophy (DMD) has achieved outstanding results with significant improvement in survival and ambulation in developed countries. Recently, males affected with DMD were identified in Zimbabwe through efforts of missionary team. We aimed to describe the status of diagnosis, natural history and challenges in management of these boys with DMD through the collaborative effort of humanitarian organizations, Muscular dystrophy center of Zimbabwe and Muscular dystrophy center at the University of Minnesota. We retrospectively reviewed and curated data from a cohort of 24 affected males with DMD ranging from 8 to 20 years of age over a period of 3 years. We report natural history and management of these patients. There is a marked delay in recognition of first symptoms and diagnosis in majority of patients. In this cohort, 75% of the affected males had family history of an at least one affected male, representing 14 families. We identified genetic variants in some affected males. The mean age of loss of ambulation was 10.3+/-1.5 years and the mean age at death was 17.8+/-2.4 years. All affected males were steroid naïve. Medical and humanitarian efforts included placing boys in the group home, training local care givers, providing wheelchairs and orthotics. The medical team started 5 patients on prednisone and 6 non-ambulatory patients on BiPAPs. Our report brings awareness of current state of health in males with DMD in Zimbabwe. Healthcare disparity due to poverty, political instability and lack of appropriate medical care results in inadequate treatment of males affected with DMD. The life span of the affected males is shorter than in the same patient population in developed countries. Humanitarian support and training of local care givers with improved access to medical care according to the published care standards may improve general health, quality of life and extend the life span of affected males." @default.
• W2891604778 created "2018-09-27" @default.
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• W2891604778 date "2018-10-01" @default.
• W2891604778 modified "2023-09-25" @default.
• W2891604778 title "DUCHENNE MUSCULAR DYSTROPHY – CLINICAL" @default.
• W2891604778 doi "https://doi.org/10.1016/j.nmd.2018.06.044" @default.
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