On May 23, the Organization of Persons with Muscular Dystrophy of Kosovo (OPMDK), organized a meeting with persons with muscular dystrophy and their families. The meeting was attended by women, men, girls and boys with muscular dystrophy, their families and representative of the Kosova Women’s Network (KWN). The main discussion in this meeting was the role of caregiver in the care of people with muscular dystrophy and the difficulties faced by those in care of such persons.
OPMDK has conducted field research for a period of three months where they managed to identify many families, members of which have dystrophy. The findings of this research are summarized in a booklet, which is expected to be published soon. This manual will also contain advices for people with muscular dystrophy how to help them face their problems easier. During their work in filed they also managed to identify families that have three people sick with dystrophy, while there was a family with five people with dystrophy and their economic situation was miserable. Representatives of the organization since have seen the situation in which these families are they are also seeking assistance from other organizations and individuals in a way that from these families to remove a little bit of the monthly expenses.
Families and individuals with dystrophy showed the problems and difficulties they face. The main challenge faced by these families is the difficult economic and social conditions. Lack of transportation for most of these people living in villages is why most of the time they stay locked inside. Many of the sick people do not have wheelchairs and a few that have, they are damaged and very difficult for moving. Another great problem is the issue of employment, and costly therapy that often is unaffordable for them. One of the participants pointed out that there are two girls that are affected by this disease and because of the difficult situation they are they stopped going to school since all the time someone should stay with them.
The organization has planned to hold a training together with officials so they can share concerns, needs and problems of families of people with muscular dystrophy in order to provide the necessary assistance to them. Also, at the beginning of June, the week of people with muscular dystrophy will be held, where during all that week there will be various activities organized to inform the general public about the situation and challenges of people with muscular dystrophy.