Podcast: Play in new window | Download (Duration: 10:03 — 9.3MB) | Embed

Subscribe: RSS

Socially distanced, but not socially distant – how patients with autoimmune diseases are staying united amid COVID-19 

• Patients with autoimmune diseases are at higher risk for severe complications of COVID-19

• Social distancing guidelines may be in place for autoimmune patients longer than the general public

• Groundbreaking, new online platform – MG United – launches to offer personalized resources and unite patients with myasthenia gravis (MG) in a time of social distancing

Ericka Greene, M.D.

The Sumner Family Chair in Neuromuscular Research, Stanley H. Appel Department of Neurology; Program Director, Neurology Residency and Neuromuscular Medicine Residence, Houston Methodist Hospital in Houston, TX

Rachel Higgins

MG patient and Myasthenia Gravis Foundation of America Community Leader, Austin, Texas

Ongoing news coverage of COVID-19 over the last few months has continuously featured experts referencing how people with pre-existing health conditions, such as heart disease, diabetes, and asthma, are at increased risk for severe complications from the virus. But what about patients with rare autoimmune diseases?

Affecting an estimated 60,000 Americans, myasthenia gravis (MG) is a rare, chronic neuromuscular autoimmune disease which causes debilitating and potentially life-threatening muscle weakness.^1-4 MG patients may feel particularly vulnerable during this time because treatment regimens often leave them immunosuppressed and severe cases of MG can be associated with difficulty breathing.^1,7 Having a rare disease during this time – and even under normal circumstances – can be isolating, and social distancing guidelines can add to feelings of loneliness.^5,6 Given the nature of COVID-19 and its manifestation of symptoms in the lungs and muscle pain, MG patients are bound to have questions.⁸

Fortunately, support for MG patients is available. MG United, a new online platform designed for MG patients and their support communities will launch June 1. MG United is dedicated to offering personalized support for those affected by MG, and seeks to address all the ways that MG can impact their lives. The platform will offer a range of resources, including navigating healthcare, symptom tracking, emotional well-being, and financial and career management.

Sponsored by argenx.

References

1.     Myasthenia Gravis. National Organization for Rare Disorders. 2017. https://rarediseases.org/rare-diseases/myasthenia-gravis/. Accessed April 14, 2020.

2.     Myasthenia Gravis Fact Sheet. National Institute of Neurological Disorders and Stroke. March 2020. NIH Publication No. 20-768. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Myasthenia-Gravis-Fact-Sheet. Accessed April 14, 2020.

3.     Gilhus et al. Myasthenia Gravis. Nature Reviews Disease Primers. 2019.  ID: (2019) 5:30

4.     Gilhus N. Myasthenia Gravis. N Engl J Med. 2016. 375:2570-81. DOI: 10.1056/NEJMra1602678

5.     Myasthenia Gravis News. Living with Myasthenia Gravis. 2020. https://myastheniagravisnews.com/living-with-myasthenia-gravis/. Accessed May 10, 2020.

6.     Courtet et al. Keep Socially (but Not Physically) Connected and Carry on: Preventing Suicide in the Age of COVID-19. Journal of Clinical Psychiatry. 2020. 10.4088/JCP.20com13370.

7.     Myasthenia Gravis. Mayo Clinic. 2019. https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036. Accessed April 14, 2020.

8.     International MG/COVID-19 Working Group. Guidance for the management of myasthenia gravis (MG) and Lambert-Eaton myasthenic syndrome (LEMS) during the COVID-19 pandemic. Journal of the Neurological Sciences. 2020. https://doi.org/10.1016/j.jns.2020.116803.