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COVID-19 CORONAVIRUS

Whilst the early severity of COVID-19 has abated and vaccination has been hugely effective, there is some renewed concern about new variants. So here we share some information to help everyone with a muscle GSD maneuver through these times.
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COVID-19 VACCINATION

In this regard we recommend keeping up to date with arrangements in your country/local region.

To the best of our knowledge, there is no reason why COVID-19 vaccines should cause any particular issue relating to muscle GSD, and we have not had any evidenced reports of such problems. There have been a few reports in journals of rhabdomyolysis following vaccination, but these reports have not established any causative link. With billions of vaccinations having been given, many will have been in people who have an underlying cause of rhabdomyolysis, whether diagnosed or not, and perhaps the vaccination has simply coincided with an episode.

If concerned, please consult with your primary physician for individual guidance.

HAVE YOU CONTRACTED COVID-19?

  • If you believe you have contracted COVID-19, please contact your primary doctor by telephone for individual guidance.

  • If you need to attend hospital, take your muscle GSD emergency information with you.

  • Inform the emergency doctor that you have a myopathy with attendant increased risk of rhabdomyolysis from succinylcholine.

  • Repeated intense coughing can cause cramps in our abdominal muscles, and coughing is a symptom of COVID-19. It is probably a good idea for us to try, every few minutes, to suppress the cough for a break of at least 30 seconds.

  • Some viral infections have been reported to cause or worsen muscle breakdown (rhabdomyolysis). There have been a small number of case reports of people with COVID-19 also having rhabdomyolysis. The reports do not appear to establish any causative link. There are many causes of rhabdomyolysis and it may be that these cases are simply coincidental.

  • It makes sense to take extra precautions to avoid, or lessen, GSD-related muscle damage.

IDEAS ON AVOIDING COVID-19

To the best of our knowledge, there is no reason for anyone with a muscle GSD to be at any increased risk of contracting COVID-19.

There are a number of things EVERYONE should do to help protect themselves, and each other:

  • Wash your hands often (for at least 20 seconds).

  • Social-distancing (6ft or 1-2m).

  • Self-isolation for anyone with other serious underlying health issues such as heart and lung disease, diabetes, etc. (Consider: travel, contact, age, medical conditions.)

  • Self-monitor for symptoms.

  • Cover coughs and sneezes with a tissue or use inside of elbow.

  • Wear a face mask if you are sick.

  • Clean and disinfect frequently touched surfaces.

FOR THOSE WITH A MUSCLE GSD

For anyone affected by one of the muscle GSDs covered by IamGSD, we suggest the following dos and don’ts.

DO

  • Consider whether there is still a need for self-isolation. Some co-morbidities are associated with GSD. If you are over 70, have diabetes, hypertension or heart disease you will be at greater risk and should self-isolate, please follow your government’s guidance.

  • Take gentle exercise, such as a slow walk (provided you are not self-isolating and can maintain social distancing). If self-isolating, develop an exercise routine for indoors.

  • Listen to your body. If any of your muscles feel fatigued, or you feel any muscle pain, SLOW DOWN or STOP.

  • Eat well-balanced meals.

  • Stay hydrated.

  • Take time to RELAX in order to avoid muscle tension.

  • Avoid stress and anxiety as this can lead to muscle tension.†

CALM™️ has made available a variety of tools to help everyone take care of their mental and emotional wellness. Go to their web site.  

DO NOT

  • Get in close contact with anyone that may have COVID-19.

  • Engage in any activities that could cause rhabdomyolysis, in order to avoid having to go the Emergency Room (A&E) which may be treating people with COVID-19 and thus risk contact.

  • Continue any activity in the presence of muscle fatigue or pain.

SOURCES OF FURTHER INFORMATION

For regularly updated public information, please use the following links to the WHO and CDC websites (for country-specific advice, please follow your own government’s recommendations).

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FOR INDIVIDUAL ADVICE

Our information above can only be in general terms. For individual advice, please contact your own medical team – initially by telephone rather than in person.

As always, IamGSD will continue to support the muscle GSD community and provide updates when available.

Page update history

First published 19 March 2020.
Reviewed 3 April 2020 (guidance from UK clinic).
Updated 18 April 2020 (warning re succinylcholine).
Reviewed 9 December 2020 (vaccination note added).
Reviewed 17 September 2021.
Reviewed 12 October
 2022.
Reviewed 12 January 2023, several updates regarding current state of vaccination, infection rates, variants and services.

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