COVID-19 Resources

Greetings families affected by titin related muscle and heart disorders.  Our world is now facing the global health challenge of the Coronavirus pandemic (COVID-19).  Please keep in mind that there are special considerations for people with titin health disorders, including carriers.  Please see details below.

  1. Video update from Dr. A. Reghan Foley, Neuromuscular and Neurogenetic Disorders of Childhood Section, NINDS, National Institutes of Health, shares how the neuromuscular community can navigate the continued COVID-19 pandemic, including guidance on vaccinations, mask wearing, deciding which medical appointments, evaluations and surgeries should not be delayed, returning to in-person school settings and what medications you may be eligible to receive if you test positive for the virus.
  2. People with neuromuscular disease are at risk for complications from COVID-19.  See here for more information from the CDC.
  3. Vaccines Webinar Featuring Dr. Francis Collins here.
  4. It is VERY IMPORTANT to try to avoid getting COVID-19.  See here for tips on how to protect yourself and others from the CDC.
  5. CHEST Foundation Care Recommendations for Home‑Based Ventilation Patients can be found here.
  6. The World Muscle Society position and advice (look for updates as well) found here.
  7. Preparedness checklist from the Speak Foundation is found here.
  8. Advocacy letter for affected individuals regarding your civil rights can be found here.
  9. Some medications used to treat COVID-19 have negative side effects on the heart.Position statement from Elizabeth McNally MD PhD, Northwestern University”I think there is very little known about the potential cardiac complications of using hydroxychloroquine or chloroquine. I would not encourage people with TTN disease to use this to prevent infection, since there is not enough known yet. Some of the early efficacy was in the setting of using many other drugs including azithromycin, so it’s very hard to know.The most severe, lethal cases of COVID-19 do seem to have heart damage, and so those with TTN should work hard to avoid infection. Stay sequestered and avoid contacts, especially avoid younger people who may not be doing such a great job at avoiding contacts since some of these people are asymptomatic/minimally symptomatic carriers.

    Be well!”

    Position statement from Prof. Diane Fatkin, Victor Chang Cardiac Research Institute

    “First, people who have cardiomyopathies have an increased risk of complications of COVID-19. Family members who have DCM need to self-isolate and take every precaution to avoid contact with COVID-19 carriers.

    Second, there have been lots of drugs proposed for COVID-19 treatment. At this stage, there are no good clinical trials to provide hard evidence for selecting one drug over another. The anti-malarial drugs (chloroquine etc) may be useful but we don’t know yet how safe they are and there is an increased risk of long QT syndrome. Hopefully the situation will be clearer in the near future. There are a number of clinical trials under way that will help sort out what is both effective and safe.

    All this is changing rapidly and we need to keep updated!”

    8. NMD-Specific COVID-19 Video Tips from Lou Saporito, BA RRT