COVID-19 CORONAVIRUS

Without a doubt, many of us are feeling anxious as we navigate the uncertainty of COVID-19 (coronavirus).  We want to share some information to help everyone with a muscle GSD maneuver through these difficult times.

Whenever you revisit please REFRESH this page in case there has been an update since your last visit.

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). At the moment there is no evidence for COVID-19 causing rhabdomyolysis.

  • However, it makes sense to take extra precautions to avoid, or lessen, GSD-related muscle damage. Hospital facilities may be overstretched and there may not be ICU beds available.

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 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.

  • Begin a new exercise program.

  • Engage in any activities that could cause rhabdomyolysis, in order to avoid having to go the Emergency Room (A&E) which is likely to be overstretched and you may not get the attention you need.

  • 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).

Go to World Health Organisation web site.

Guidance from the UK McArdle Clinic to their patients

The UK McArdle Clinic wrote on April 2nd to those attending the Clinic to give guidance regarding COVID-19. The very useful guidance and links provided are of course UK-specific, but will be of more general interest internationally. The clinic in London sees about 250 people with McArdle’s, from all over the UK, – the largest cohort of McArdle patients anywhere in the world. The clinical lead, Prof Ros Quinlivan, is the founding member of IamGSD’s Scientific Advisory Board.

 

Download a PDF of the UK clinic’s letter to their patients.

 

Please note that the clinic can answer questions ONLY from those patients attending the clinic, and not from others in the UK or elsewhere.

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.

Published 19 March 2020. Reviewed: 3 April (guidance from UK clinic), 18 April (warning re succinylcholine).

What is IamGSD?

We are a patient-led international group encouraging efforts by research and medical professionals, national support groups and individual patients worldwide.

What is Muscle GSD?

Human bodies make glucose from carbohydrates. Excess glucose is stored as glycogen in our muscles and liver. Muscle glycogen storage disease is when our muscles cannot convert their glycogen back into glucose to power our muscles.

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If you have another muscle GSD please contact us.

Site updated: 05/2020.

© IamGSD 2017 – 2020.

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