I have had some conversations with our medical experts about what we know about MLIV in the context of COVID-19. Some of you have asked if people with MLIV have decreased immunity, or are more at risk for COVID-19. I want to share the following comments from scientists, which represents current thinking on these topics:
- As far as we know, the immune system is not compromised in MLIV patients, and people with MLIV are typically healthy (we do not see evidence in the medical records, for instance, of people with MLIV being more likely to contract infections, or having more severe experience of illness when they are sick). There may be particular cases where the immune system in individuals with MLIV is compromised but MLIV itself does not seem to cause immune concern.
- However, any patient with a neurological disability, including MLIV, should be considered higher risk in regard to COVID-19. An impaired ability to communicate symptoms, clear oral secretions or cough forcefully to clear airways make a respiratory tract infection, if contracted, more dangerous. Keeping your MLIV child from contracting COVID-19 or a respiratory infection is, therefore, important.
- Current advice about home help is that it should continue if assistance is necessary for everyday care or if the patient requires the skilled expertise of the home care nurse (injections, administration of medications, etc.). If parents feel they can handle home care without assistance, temporarily discontinuing home care would reduce the risk of exposure and should be considered. However, if home care cannot be completely assumed by the parents, it should continue.
- Continue to follow all CDC guidelines!
The ML4 Foundation is eager to ask particular questions of the medical experts as you have them. Share your concerns at firstname.lastname@example.org and we will respond to you directly as well as post updates on this site and on our ML4 Families on Facebook site.
Stay home, wash hands, and stay in touch.
Rebecca Oberman, Ph.D.
Mucolipidosis Type IV (ML4) Foundation
1440 Spring Street NW
Atlanta, GA 30309