Risk of NMOSD relapse

Risk of NMOSD relapse

Published 09 September 2020

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

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.

poster
While NMOSD and MS share some overlapping features, a distinctive factor is that NMOSD relapses can be significantly more severe and with very poor recovery, the effects of which are often permanent. Given the impact relapses have on people living with NMOSD, time and accuracy in diagnosis, and appropriate treatment, are essential to ensure optimal outcomes and quality of life for those with this condition.”
Professor Anthony Traboulsee Neurologist and Professor, University of British Columbia, and Research Chair of the MS Society of Canada

MARIA & JESUS

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.

poster

AVERY

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.

poster
Typically, symptoms of NMOSD, such as loss of vision, weakness or paralysis, come in acute and unpredictable relapses that can lead to cumulative, irreversible neurological damage and disability. Therefore, a treatment to reduce relapses will help those living with NMOSD to engage in life as fully as possible.”
Paulo Fontoura Global Head for Neuroscience and Rare Disease at Roche

UNDERSTANDING RELAPSES

  • Most people with NMOSD experience sporadic, recurring relapses. Unlike with some other autoimmune diseases, these relapses often cause symptoms to permanently worsen, thereby increasing disability.
    Most people with NMOSD experience sporadic, recurring relapses. Unlike with some other autoimmune diseases, these relapses often cause symptoms to permanently worsen, thereby increasing disability.
  • People who suffer an NMOSD relapse often experience new or worsening symptoms that negatively impact their daily activities and the quality of their lives.
    People who suffer an NMOSD relapse often experience new or worsening symptoms that negatively impact their daily activities and the quality of their lives.
  • People with NMOSD tend to have relapses early in the course of the disease, which are unpredictable and often occur in clusters. While some people may experience a partial or complete recovery after a relapse, in many cases they do not recover, resulting in permanent disability.
    People with NMOSD tend to have relapses early in the course of the disease, which are unpredictable and often occur in clusters. While some people may experience a partial or complete recovery after a relapse, in many cases they do not recover, resulting in permanent disability.
  • The amount of neurodegeneration that people with NMOSD suffer is almost exclusively related to their relapses. This is different from MS, which is a progressive disease from the start, no matter how it manifests, as disability tends to accumulate relentlessly.
    The amount of neurodegeneration that people with NMOSD suffer is almost exclusively related to their relapses. This is different from MS, which is a progressive disease from the start, no matter how it manifests, as disability tends to accumulate relentlessly.

Tags: People, Science, Patients, Neuroscience