NURSING APPROACH IN SPINAL MUSCULAR ATROPHY

Spinal muscular atrophy is an important genetic disease that affects motor neurons in the spine, causing muscle weakness, particularly in infancy. Spinal muscular atrophy occurs with a deletion of the survival motor neuron gene and is one of the leading causes of early death in infants. Although some drugs are used for the treatment of spinal muscular atrophy in the world and in Turkey, there is still no treatment method that provides complete recovery. The limited treatment options for spinal muscular atrophy, its inaccessibility and the poor prognosis of the disease negatively affect the quality of life of individuals and their families. All stages of the disease, starting from the diagnosis process, are very difficult for the patient and his family. A multidisciplinary approach is needed to help patients and their families cope with these difficulties. This approach includes areas such as medical care, rehabilitation, psychosocial support and education. It is essential that nurses, as key members of the health care team, improve the patient's quality of life, manage symptoms and support the individual and family in this process. In particular, supporting the patient and family in their care and educating them about their care needs is one of the most important roles of nurses. With this review, an attempt has been made to discuss the diagnostic methods, treatment process and nursing approaches of spinal muscular atrophy disease, which is a current problem in the world and in Turkey.