Explaining the Individual Challenges of Women Affected by Neuromyelitis Optica

Neuromyelitis optica spectrum disorder (NMOSD) is a chronic inflammatory disease of the central nervous system (CNS) which usually affects young women, and have been distinguished in all races, cultures, and regions. It has a considerable economic burden on society due to the high cost of medical treatment and low employment rates among NMOSD patients. NMOSD affects the optic nerve causing visual dysfunction or permanent visual loss. In addition, depression, anxiety, panic attacks, obsessive-compulsive disorder, aggression, paranoia, and stress can reduce the overall quality of life in these patients. In Tehran, Iran, the incience of NMOSD is highyly increasing and affected patients are experiecing various physical and mental problems. Sixteen NMOSD patients completed a face to face deep semi-structured interview. Participants were recruited from the multiple sclerosis (MS) ward in Sina hospital. Following the interview, the data were analyzed using conventional content analysis, as recommended by Graneheim and Lundman (2005). Data analysis was managed with MAX Qualitative Data Analysis 2018 (MAXQDA2018) software. In this study, the categories are named after each other and have many similarities, which in the NMOSD group include four categories including: “From uncertainty to the perception of threat”, “Living with limitations”, “Active coping until normalization” and “Facilitators of personal problems” appeared. This qualitative study showed that the individual problems of the NMOSD patients are complicated. People with NMOSD need long-term rehabilitation care which should be considered and examined. The unpredictability of relapse in NMOSD patients can have a profound effect on their daily lives. Therefore, knowing the health and life problems of patients with NMOSD can help health care teams to improve the quality of patient care and quality of life.