Neuromyelitis optica spectrum disorder (NMOSD) is a rare, lifelong and debilitating autoimmune condition of the central nervous system characterised by inflammatory lesions that primarily damages the optic nerve(s) and spinal cord.

People with NMOSD can experience unpredictable relapses that can reoccur unsuspectingly after days, months or even years, and can vary in terms of severity. They can cause symptoms such as blindness, muscle weakness and paralysis – sometimes permanently. A few of these people shared their personal stories of what it is like to live with the risk of a relapse.

Michelle, a mother of five children, was initially misdiagnosed with multiple sclerosis (MS), which shares many of the symptoms and characteristics of NMOSD. Both autoimmune diseases attack normal central nervous system tissues as foreign, causing inflammation, damage and sometimes optic neuritis. NMOSD is rarer, and while people living with MS may experience flare-ups of symptoms or relapses, people with NMOSD may not recover as well, often resulting in cumulative and irreversible damage. A blood test for antibodies present in most people with NMOSD, called aquaporin-4 antibodies (AQP4-IgG), can help correctly diagnose NMOSD.

Maria and Jesus, her husband of 23 years, have experienced the sudden and lasting impact NMOSD relapses can have on a life, and on a family. Before she was diagnosed with NMOSD in 2006, Maria knew she was sick, but doctors were unable to determine the cause of her condition. In a search for answers, Maria and Jesus flew from the U.S. to Venezuela to visit Jesus’s brother, who is a doctor. During the flight, Maria experienced a relapse, leaving her nearly paralysed on one side of her body. Subsequent relapses further diminished her mobility.

At the age of 19, Avery was on holiday when she experienced severe eye pain, followed by an intense headache. After experiencing muscle weakness that caused her inability to walk and several trips to the accident and emergency services (A&E), she was diagnosed with optic neuritis, a condition where the optic nerve is inflamed, causing pain and often a temporary loss of vision as well as transverse myelitis, an inflammatory condition causing injury to the spinal cord – leading to her NMOSD diagnosis. As a normally healthy athlete on a college sports scholarship, the news of her diagnosis took a toll on Avery.

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