Living with NMOSD: impact, diagnosis and hope
Neuromyelitis optica spectrum disorder (NMOSD) can profoundly impact every aspect of a person’s life. People living with NMOSD want to retain their independence and stay in control, fitting treatment in with their day-to-day lives.
Neuromyelitis optica spectrum disorder, or NMOSD, is a rare, lifelong and debilitating autoimmune disease of the central nervous system. It is most common among women in their 30s and 40s – profoundly impacting a person in the prime of their lives and their family.
People with NMOSD may experience sudden relapses, which can be a source of constant worry. Their sight and mobility can be taken away in an instant, leaving them with a feeling that they are losing their independence. As a result, preventing relapses is the primary goal for NMOSD management.
Watch the following animation to understand what life is like for people with NMOSD, their family and those who care for them.
A study among 522 people with NMOSD found more than 95% reported some impairment in their ability to accomplish what they would like to or participate in work or other activities.1 A Roche survey2 across 13 countries found people with NMOSD feel a profound loss of control over their lives and have feelings of anxiety and a sense of dependency on others. Furthermore, 48% of people with NMOSD would prefer their treatment at home, yet 60% of those who preferred this either aren’t given the choice, or it isn’t available to them.
I don’t feel confident at all anymore, I’ve been deprived of my freedom. I can’t drive a car anymore, that was my freedom. Now, I often have to count on the help of third parties.
The right help and support can bring stability to people with NMOSD and ease the burden of the disease. This includes enabling people with NMOSD to take control of how their condition is managed and treated, based on their changing needs, to help them maintain a sense of independence.
The threat of another relapse brings a great deal of uncertainty to people with NMOSD, so reducing the risk of relapse can relieve some of this worry. It is important people living with NMOSD are involved, alongside their doctor, in decisions about their care. Taking an individual’s priorities and needs into account in this way can help restore a much-needed sense of control to their day-to-day lives in order to plan for a future beyond NMOSD.
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