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Life with Neuromyelitis optica spectrum disorder: Staying who you are with a rare disease

Neuromyelitis optica spectrum disorder (NMOSD) is a rare, lifelong and debilitating autoimmune condition of the central nervous system (CNS) affecting just a few hundred thousand people globally.

NMOSD primarily damages the optic nerve and spinal cord, which can cause blindness, muscle weakness and paralysis.

NMOSD usually strikes in the prime of people’s lives, when they are in their 30’s and 40’s.

Maria was diagnosed with NMOSD 13 years ago. With her husband of more than 20 years, Jesus, they face the everyday realities of this disease, but still enjoy their life together. They share their story here.

In NMOSD, the immune system mistakes normal tissues of the CNS as being foreign and attacks the optic nerve and spinal cord. The exact cause of NMOSD remains unknown.

Although most cases of NMOSD can be confirmed through a diagnostic test, people living with the condition are still frequently misdiagnosed with multiple sclerosis, due to overlapping features, including its higher prevalence in women, its symptoms and the fact it is a relapse-based disease.

Avery was diagnosed at just 19 years old, and due to advancements in the area, received a prompt and accurate diagnosis. Despite hearing the news at such a young age, Avery has stayed true to who she is. You can hear her story here.

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I feel like NMOSD shouldn’t have to get in the way of what you want to do, or your dreams and aspirations in life."
Avery Allmond, living with NMOSD

The impact and future of NMOSD

NMOSD is progressive, which means symptoms continue to build with each relapse, often leaving people wheelchair bound or blind. Learn more about key facts and statistics to understand more about NMOSD, its impact, and why Roche is committed to helping people living with the condition.

There are currently no approved treatments for NMOSD, but we are conducting extensive research to help provide innovative and effective methods to treat NMOSD and improve the lives of those living with it. At Roche, our philosophy is simple: follow the science to help preserve what makes people who they are.

There is hope for optimism. For the first time in history, we have the tools, technology and scientific insights that we believe will lead to new types of medicines that can alter conditions such as NMOSD. We are committed to pursuing the challenges of neuroscience with the same curiosity, passion and rigor as we have done in oncology.

Tags: Science, Patients