Duchenne muscular dystrophy (DMD) is a recessive X-linked form of muscular dystrophy, which results in muscle degeneration, difficulty walking, breathing, and death. The incidence is around 1 in 3,600 boys.[1] Females and males are affected, though females are rarely affected and are more often carriers. The disorder is caused by a mutation in the dystrophin gene, located in humans on the X chromo
some (Xp21). The dystrophin gene codes for the protein dystrophin, an important structural component within muscle tissue. Dystrophin provides structural stability to the dystroglycan complex (DGC), located on the cell membrane. Symptoms usually appear in male children before age 5 and may be visible in early infancy. Progressive proximal muscle weakness of the legs and pelvis associated with a loss of muscle mass is observed first. Eventually this weakness spreads to the arms, neck, and other areas. Early signs may include pseudohypertrophy (enlargement of calf and deltoid muscles), low endurance, and difficulties in standing unaided or inability to ascend staircases. As the condition progresses, muscle tissue experiences wasting and is eventually replaced by fat and fibrotic tissue (fibrosis). By age 10, braces may be required to aid in walking but most patients are wheelchair dependent by age 12. Later symptoms may include abnormal bone development that lead to skeletal deformities, including curvature of the spine. Due to progressive deterioration of muscle, loss of movement occurs, eventually leading to paralysis. Intellectual impairment may or may not be present but if present, does not progressively worsen as the child ages. The average life expectancy for patients afflicted with DMD is around 25, but this varies from individual to individualMD ORGANIZATION NEPAL;
Considering the above matters MD Organization has been established to rehabilitate the children suffering from Duchenne and Becker Muscular Dystrophy to provide them good quality of life as long as they live in the world..It is one kind of social Organization which provides the services for DMD and BMD children.60% of the total members are selected from communities victimized groups and 40% come from experts, physician, social workers and physiotherapists. PROGRAMME AREA;
Currently MD childrens from Banepa,Panauti & Dhulikhel towns and it surroundings in Kavre District in Nepal, physically challenged from Muscular Dystrophy terrible disease from poor family are targeted. We are keen to open sub-centers in different parts of the Nation to ease regular services for MD if programmed get success. VISION;
Our vision is to educate the MD patients, Parents and communities about terrible Muscular Dystrophy disease in Nepal. To let know about the promising trials and lots of research in the world wide, increased their ability of various trainings like English language class, computers training, art trainings etc. Support parents income programs like teaching them sewing, handy-craft trainings, etc. To live happy and joyful life every humans deserves. So to conserve humanities and make challenged peoples happy in life is the holiest things in the world. MISSION;
To provide quality of life to Muscular Dystrophy patients in outskirts of the capital city in Banepa, Panauti & Dhulikhel towns and its surroundings in Kavre district Nepal as long as we are able to work. Muscular Dystrophy patients r deprived of their daily basic needs like food, clothes, medicines, entertainments, physiotherapy, regular health check-up, awareness programs, computers, English language classes in order to teach them real world, skills like paintings and drawings, medical care, medical stuffs etc at one roofs as well as in the communities level. So that they may never feel burden in this world. OBJECTIVITIES;
1.To conduct to develop intellectual skills of the children suffering from DMD and BMD.
2.To emphasize games and exercises.
3.To provide necessary physiotherapy services in order to keep the body as strong as possible.
4. To provide services and facilities so that they can live their lives to their full potential.
5.To provide regular health check up, treatment to MD children, to provide health information and advice to the affected families.
6.To establish co-operation with national and international organization related to the health services and MD disease.
7. To conduct public awareness programmed related to MD disease.
8.To provide handy-craft training and support parent's income generation.
9.To provide the skill training programmed of painting to victimized person of BMD&DMD. ACTIVITIES;
The following activities will be held in order to achieve goals above;
1.Education with running curriculum be given.
2.Skill oriented programmed, such as computers and other practical education along wit harts, crafts, paintings, games ,etc. will be given.
3. Awareness programmed will be held by publishing and interaction programmed about BMD &DMD disease in the public, parents and professionals.
4.Establishing a 'Center Service, Home Based Service' and Sub-Services in various parts of Nepal.
5.To support gene test.
6.To support of medicine, physical equipment and physiotherapy will be provided to maintain the physical strengthen to MD patients.
7.Vocational training programmed for parents and family members will be given in order to develop skills and confidence.
