COVID-19 for people affected by Duchenne or Becker #3

What we know about COVID-19 part 3

What do we know about COVID-19 for people affected by Duchenne or Becker? Due to the increasing concerns regarding the COVID-19 virus for people with Duchenne and Becker muscular dystrophy, the World Duchenne Organization had hosted their third webinar last Saturday for its members.  Information is provided by World Duchenne Organization.

In the third WDO Webinar, Prof. Dr. Jan Verschuuren, head of the neurology department at the LUMC in the Netherlands, shares how they have prepared their hospital for potential DMD/BMD patients with COVID-19.

Preventive Measures

Since there is no vaccine against the virus or cure against the disease, and most medicines are used to model the course of the disease, prevention is really key. Luckily, people with Duchenne are very aware when it comes to infection during this time of the year. Most families are already isolating at home and make sure they have a small group of people around them. You cannot be isolated completely due to the care you need. However, these team members need to respect social distancing and hygiene rules strictly.

In case you need to go to the hospital, you need to make sure you have clear information with you about the diagnosis, the medication you are taking and your ventilatory devices. Bring your ventilatory devices with you. You need to have the names and contacts of doctors in the field of Duchenne because if you are admitted to the hospital you may be seen by another doctor and there will be a lot of stress.

Read more >

Create Awareness In Hospitals On Potential COVID-19 Duchenne Patients

World Duchenne Organization also wrote a letter to occupational physicians. They made the statement that if you’re working in healthcare and have a boy with Duchenne, you should be allowed to stay at home and care for the boy to minimize the risk of infecting your own child. This also applies to carers that do not work in a healthcare facility, although the chance of being infected is probably lower than for those that work in a hospital and come in direct contact with patients. [ Read more here. ]

To-Do’s

  • Maximize your efforts to try and prevent infection
  • Get your clinician’s information so you can contact them in case of an emergency
  • When admitted to the hospital, immediately state your diagnosis and that you need special attention
  • Make sure you have protective gear such as masks for your carers
  • Contact your hospital and ask if they are prepared for a possible COVID-19 DMD case

 

This is the report of one webinar from the webinar series the World Duchenne Organization is hosting regarding the current COVID-19 pandemic. Please consult your clinician if you have specific questions on the medicines regimen. This information meant as general recommendations and does not replace personal medical advice.

More links

All questions and answer here: www.worldduchenne.org