OVERCOMING PSYCOLOGICAL BARRIERS IN PATIENTS WITH RARE GENETIC DISORDERS
Journal Title: Праці Наукового товариства ім. Шевченка - Year 2017, Vol 49, Issue
Abstract
Nowadays there are lots of rare (orphan) genetic disorders caused by different types of mutations. Obviously, defect genes encode dysfunctional proteins which modify general biochemical pathways, but also it’s worth mentioning about a great number of patients with rare diseases who have psychological problems, such as high levels of stress, depressions and problems with social adaptation. Moreover physicians face diffi culties in sharing experience of treatment of these diseases. The research aims to assemble all types of knowledge concerning treatment, diagnosis of orphan genetic disorders, prevention of mental issues and to make statistical assessment of Ukrainian progress in this fi eld of medicine. Several tasks were set: • detailed review of online blogs, groups, sites, where patients and doctors from different parts of the world can fl uently communicate with each other; • searching for Ukrainian patient communities; • analysis of the statistics of diagnostics and treatment of rare genetic disorders in Ukraine; • assessment of the level of psychological assistance to people with rare genetic syndromes.
Authors and Affiliations
Khr. Yuskiv, D. Klymyshyn, A. Kruglykova
Keywords
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