The article represents analysis of current practice of medical aid in Duchenne muscular dystrophy (DMD) patients in Ukraine through its compliance to international consensus. DMD is disease, which is related to type of rare ones, it has fatal course and leads to death at the age about twenty years. However, recent abilities of medical management substantially increase periods of good functioning and entire life expectancy. Analysis has been made on data from Ukrainian DMD registry. 75 entries from the registry were selected on basis of data completeness and consistency. Improvements of corticosteroid therapy prevalence and age of diagnosis, compared to 2012 indexes, have been revealed. Most diffi cult problem, which does not have visible progress, is equipment (motorized chairs, cough assist machines, BIBAP-machines) supply. It is noticed that along with widening of specific to DMD children medical aid, number of wrong or inadequate recommendations has been increased. Possibility of medical aid improvement for patients with DMD or similar rare conditions by the help of “centers of expertize” has been discussed.
Keywords: Duchenne muscular dystrophy, DMD, Ukrainian DMD registry, medical management, analisys
Study of medical management for patients with Duchenne muscular dystrophy in Japan: what was changed by a practical guideline
