mail2

NMOSD and the COVID-19 Pandemic
FAQs

Dear Friends,

We hope everyone is well and coping with the challenges of the COVID-19 pandemic. With information changing on a daily basis, we are reaching out to the NMOSD community to aid in your navigation of the many questions at hand. While the Foundation does not provide clinical care policies or recommendations, we hope these 10 frequently asked questions assist all NMOSD patients to make informed decisions with their doctors.

1. What is the difference between SARS-CoV-2 and COVID-19 ? SARS-CoV-2 is the name of the specific strain of coronavirus causing the current pandemic.  COVID-19 is the name of the disease caused by this virus.  The acronym COVID-19 is derived from:  CO = corona + VI = virus + D = disease + 19 = emerged in 2019.

2. Does NMOSD increase my risk of SARS-CoV-2 infection ? There is no evidence at the present time to suggest that having NMOSD increases the risk of being infected by the virus itself.  Avoiding exposure is key (see below).

3. Would COVID-19 increase my risk of having an NMOSD relapse ? While there is no established proof that infection causes relapses in NMOSD, some data suggest inflammatory events such as infection might raise the risk of having a relapse.  To minimize this risk, observe best practices to avoid infection (see below).

 4. Would COVID-19 increase my risks of a secondary infection ? In some viral infections such as influenza, up to 65% of individuals experience secondary infections caused by bacteria or fungi.  These risks may be greater in patients on immune suppressing therapy.  A lower risk of secondary infection in COVID-19 is not yet proven.

 5. Should I continue NMOSD therapy during the COVID-19 pandemic ? The U.S. Centers for Disease Control & Prevention (CDC) and American College of Rheumatology (ACR) have offered guidance on this point.  These organizations encourage patients to decide with their doctors regarding the best treatment plan, weighing all factors.  Generally, the CDC and ACR suggest there is no evidence for patients to change their normal treatment regimen & schedule.  Stopping treatment may increase risks of relapse and necessitate clinical care in settings that may increase risks of exposures to the SARS-CoV-2 virus or other germs.  Please note that the CDC or ACR guidance may be subject to change.  Consult your NMOSD neurologist with any special concerns.

6. What should I do if I have symptoms of an infection ? If you have a persistent fever, cough, sore throat, runny nose, swollen lymph nodes, eye redness or any other symptoms of respiratory or other infection, please contact your NMOSD neurologist right away.  You may be tested for other respiratory infections (e.g. influenza), which can be treatable in early stages.  In any infection, early detection and treatment affords best outcomes.

7. What should I do if I experience symptoms of a relapse ? If you experience new onset signs or symptoms of an NMOSD relapse (e.g. vision change, numbness or weakness in limbs, bowel or bladder dysfunction, etc.) please contact your NMOSD neurologist right away.  Early, accurate diagnosis of true relapses allows best care.

8. What can I do to help stay healthy & cope with COVID-19 ?

Safe Lifestyle:

Practice hygiene, social distancing and CDC measures to minimize risk of infection.

Healthy Diet:

Eat a nutritious diet, wash fruits and vegetables and avoid any raw meats or eggs.

Sleep Restful:

Restorative sleep occurs late during the sleep cycle, which takes 6 or more hours.

Stop Smoking:

Respiratory infections target lung disease.  Stop smoking for your health & others.

Be Resilient:

Change has become part of everyday life in COVID-19.  Adaptation is a necessity.

Stay Positive:

The COVID-19 pandemic will pass in time.  Until then, optimism & patience abide.

9. Can I learn more about NMOSD & enhancing quality of life ? The GJCF website offers many resources for patients, caregivers, families and healthcare providers to consider in choosing how to improve quality of life.

10. Does GJCF have any healthcare recommendationsThe Foundation does not offer clinical or healthcare recommendations.  We hope this FAQ sheet helps you & your doctor decide best healthcare practices for you.

Translations

Online Breakout Sessions

Upcoming

Online Breakout Session: NMOSD and COVID-19 Update

Please save the date for our next Online Breakout Session on Friday, December 4, 2020 at 10 AM PDT on Facebook Live.  This one-hour event will be hosted by GJCF Chief Medical Advisor Michael Yeaman, Chief of Molecular Medicine, Harbor-UCLA Medical Center.

  • Date: Friday, December 4, 2020 at 10 AM PDT
  • Hosted by:  GJCF Chief Medical Advisor Michael Yeaman
  • How to join: Visit us on Facebook.

Previous Recordings

<a href='https://guthyjacksonfoundation.org/videos/pediatric-nmosd-covid-19/' title='Online Breakout Session – Pediatric NMOSD: School Daze'>Online Breakout Session – Pediatric NMOSD: School Daze</a>
<a href='https://guthyjacksonfoundation.org/videos/online-breakout-session-nmosd-covid-19-news-july-17/' title='Online Breakout Session: NMOSD & COVID-19 News (July 17)'>Online Breakout Session: NMOSD & COVID-19 News (July 17)</a>
<a href='https://guthyjacksonfoundation.org/videos/online-breakout-session-dietary-interventions-nmo/' title='Online Breakout Session: The Four Goals of Dietary Interventions in NMO: Anti-inflammatory, Antioxidant, Immunomodulation and Repair'>Online Breakout Session: The Four Goals of Dietary Interventions in NMO: Anti-inflammatory, Antioxidant, Immunomodulation and Repair</a>
<a href='https://guthyjacksonfoundation.org/videos/online-breakout-session-update-immunity-in-nmosd-vs-covid-19/' title='Online Breakout Session Update: Immunity in NMOSD vs. COVID-19'>Online Breakout Session Update: Immunity in NMOSD vs. COVID-19</a>
<a href='https://guthyjacksonfoundation.org/videos/online-breakout-session-ask-the-founder/' title='Online Breakout Session: Ask the Founder'>Online Breakout Session: Ask the Founder</a>
<a href='https://guthyjacksonfoundation.org/videos/online-breakout-session-navigating-covid-19-news/' title='Online Breakout Session: Navigating COVID-19 News'>Online Breakout Session: Navigating COVID-19 News</a>
<a href='https://guthyjacksonfoundation.org/videos/online-breakout-session-keep-calm-and-quarantine-on-with-yogi-cameron/' title='Online Breakout Session: Keep Calm and Quarantine On with Yogi Cameron'>Online Breakout Session: Keep Calm and Quarantine On with Yogi Cameron</a>
<a href='https://guthyjacksonfoundation.org/videos/online-breakout-session-simplifying-the-science-of-nmosd-covid-19/' title='Online Breakout Session: NMOSD & COVID-19: Simplifying the Science'>Online Breakout Session: NMOSD & COVID-19: Simplifying the Science</a>
<a href='https://guthyjacksonfoundation.org/videos/online-breakout-session-nmosd-and-covid-19-faqs/' title='Online Breakout Session: NMOSD and COVID-19 FAQs'>Online Breakout Session: NMOSD and COVID-19 FAQs</a>

NMOSD and COVID-19 Research Publications

Current and emerging therapeutics for neuromyelitis optica spectrum disorder: Relevance to the COVID-19 pandemic

Multiple Sclerosis and Related Disorders. VOLUME 44, 102249, SEPTEMBER 01, 2020. Published:June 02, 2020

Read More

Treating multiple sclerosis and neuromyelitis optica spectrum disorder during the COVID-19 pandemic.

Neurology. 2020 Apr 2. pii: 10.1212/WNL.0000000000009507. doi: 10.1212/WNL.0000000000009507. [Epub ahead of print]

Read More

Immunosuppression during the COVID-19 pandemic in neuromyelitis optica spectrum disorders patients: A new challenge

Mult Scler Relat Disord. 2020 Jun; 41: 102097. Published online 2020 Apr 5. doi: 10.1016/j.msard.2020.102097

Read More