Over the past several weeks, SRNA has collected questions from our community on COVID-19 and how it may impact people with rare neuroimmune disorders. Recently, we had the chance to ask several members of our Medical and Scientific Council to shed light on this developing situation and answer the most frequently asked questions we collected. You can view these FAQs here.
Please note that our medical experts are answering questions to the best of their current medical knowledge, and information is changing rapidly. Please also keep in mind that SRNA cannot provide individualized medical advice. The information provided here is for informational purposes only and is not intended to take the place of consultation with your physician. If you have concerns about your health or treatment, please contact your physician, pharmacist, or other medical professional.
Dr. Benjamin Greenberg of University of Texas Southwestern answered general questions regarding COVID-19, including prevention techniques, when you should start wearing a mask, and how to safely bring in groceries from the store. He also answered many questions specific to the rare neuroimmune disorder community, such as “Because I have TM, can I be around other people?” and “Are there special precautions for caring for one at home who is ventilator dependent?” Additionally, Dr. Greenberg answered several questions about medications and supplements such as anti-inflammatory medications and Vitamins C and D.
Dr. Michael Levy of Massachusetts General Hospital and Harvard Medical School also took time to answer some of the frequently asked questions from our community. In an interview with SRNA’S Associate Director of Research and Education GG deFiebre, Dr. Levy answered questions about the relationship between COVID-19 and long-term medications such as Rituxan and azathioprine. He also discussed the changes that hospitals and medical centers are implementing to keep patients safe and the considerations someone should take into account before deciding whether to visit a hospital for non-emergency treatment (such as IVIG infusions) and check-up MRIs. Finally, Dr. Levy discussed ways to properly sanitize mobility devices, and he discussed the possible risks associated with acute treatments for individuals who are newly diagnosed with a rare neuroimmune disorder or who are experiencing a relapse.
Dr. Carlos Pardo of the Johns Hopkins University School of Medicine responded to the remaining questions from our community in an interview with GG. He answered questions about the susceptibility of people with rare neuroimmune disorders and other autoimmune diseases to becoming infected with COVID-19, and he described the reaction of the immune system in those infected with this coronavirus. Dr. Pardo explained the ways in which this coronavirus is similar and different from other viruses, and he discussed what we have learned so far from observing the situations in China and Italy. Finally, Dr. Pardo emphasized that the best precautions people can take are to follow CDC’s guidelines on isolation, quarantine recommendations, and extreme care to protect family members that are exposed to higher risk because they have rare neuroimmune disorders.