Home Health & Wellness COVID-19 Concerns
COVID-19 Concerns
Post your questions or concerns about COVID-19 on Reeve Connect for our Information Specialists and experts to address here.

COVID-19 and Rare Neuroimmune Disorders

Patricia_PRCPatricia_PRC Moderator Posts: 6 Moderator
First Anniversary First Comment Photogenic
From the Siegel Rare Neuroimmune Association:

COVID-19 and Rare Neuroimmune Disorders

As the spread of COVID-19 continues across the world, it's important our community knows and understands the risks associated with this virus in the setting of a rare neuroimmune disorder. Risk factors associated with COVID-19 may vary significantly for each individual diagnosed with a rare neuroimmune disorder. Although many who live with these diagnoses are healthy individuals, there are many with compromised or suppressed immune systems, respiratory concerns, and other factors that make their susceptibility to illness more significant. Each individual and family should know their risks and take appropriate precautions relative to their diagnosis and, if in doubt, consult your treating physician. 

The National Organization for Rare Disorders (NORD) has issued guidance on the prevention and risk associated with COVID-19 for the rare disease community. Dr. Benjamin Greenberg of the University of Texas Southwestern noted, "It is important for all patients on immunosuppressive regimens to take precautions against being exposed to the circulating Coronavirus. Frequent hand washing, reduced public exposure, and social distancing are all recommended. Stay up to date with NORD and CDC recommendations and discuss specific concerns with your health care providers. If you develop fevers or respiratory symptoms, seek care as dictated by your local providers.

Shepherd Center has also posted information on how COVID-19 could affect people with spinal cord or brain injuries. ADEM, AFM, TM, MOG-Ab Associated Disease, and NMOSD are or may be considered non-traumatic brain or spinal cord injuries. As noted by Shepherd Center, the data available is insufficient; however, it is possible those with underlying chronic medical conditions may be at more severe risk. They note as well, “As coronavirus is a respiratory infection, you are at much greater risk of severe infection and increased mortality if you acquire coronavirus. Avoid traveling to affected areas, traveling on planes or large group gatherings. Wash your hands frequently.” Furthermore, anybody with respiratory deficits or weakness in the chest or diaphragm will be at high risk of complications because of the difficulties generated by the pneumonia, hypoventilation or respiratory distress.

The CDC (https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html) recommends that patients with high risk, which includes patients with neuroinflammatory diseases: 
•    Stock up on supplies including medications. Let your provider know if you need refills. 
•    Avoid close contact with people who are sick.
•    Take every day preventative actions: clean hands often and avoid touching your face, nose, eyes, etc.
•    When you go out in public, keep away from others who are sick, limit close contact and wash your hands often.
•    Avoid crowds, especially in poorly ventilated spaces. This would include airplane travel and public transportation. Your risk of exposure to respiratory viruses like COVID-19 may increase in crowded, closed-in settings with little air circulation if there are people in the crowd who are sick.

If you are on immunosuppressive medications such as Mycophenolate (Cellcept®), azathioprine (Imuran®), methotrexate or other steroid-sparing medications, please make sure you update the safety laboratory testing (e.g., Complete blood cell count and differential, liver function test, and immunoglobulins). For patients on B-cell therapies or Tysabri, such as Rituximab or Ocrelizumab (Ocrevus®), a similar update of safety blood tests is recommended.

Please take the time to familiarize yourself with the recommendations of NORD, CDC, and Shepherd Center. Bookmark these links and refer back to them as the situation is continuously developing and quickly changing. Be proactive and cautious, act with knowledge, and not out of fear.

Patricia E. Correa

Associate Manager, Information Services and Translation
Christopher & Dana Reeve Foundation

Have a question about paralysis and need personalized assistance? Contact our Information Specialists: www.ChristopherReeve.org/Ask
Sign In or Register to comment.