The G1DF has received questions around the concerns over the COVID-19 pandemic and whether Glut1 Deficiency patients are at an increased risk. We understand this is a time of uncertainty and alarm. While there are no special or unique recommendations specific to our disease, the CDC (Centers for Disease Control and Prevention) has cautioned that certain underlying medical conditions, including some that involve neurological symptoms, metabolic issues, and developmental disabilities, may be at increased risk for illness from COVID-19.

There have also been questions around the vaccines and whether Glut1 Deficiency patients should receive them. Discussions with our Medical Advisory Board members suggest that as is the case with most illnesses and vaccines, the risk for symptoms and serious complications from illness outweighs potential side effect risks from the vaccines, so vaccines in general are recommended. However, there may be individual circumstances that make each decision a very personal one, so recommendations are that these decisions are best made with your healthcare team who knows each personal history and situation.

In addition, there should not be any reason that one type or brand of vaccine would be recommended for Glut1 Deficiency patients over another.

At this time, the Glut1 Deficiency Foundation is aware of several of our patients who have had COVID-19 and also several who have had the vaccines, and thankfully so far there have been no reports of serious illness complications or side effects from either illness or vaccination.

Experts from our Medical Advisory Board have reinforced the importance of everyday precautions to help prevent illness and spread:
  • Avoid contact with people who are sick.
  • Cover your cough.
  • Practice social distancing.
  • Avoid touching your face, nose, eyes, etc.
  • Wash your hands often with soap and water for at least 20 seconds, especially after blowing your nose, coughing, or sneezing, or having been in a public place.
  • If soap and water are not available, use a hand sanitizer that contains at least 60% alcohol.
  • Clean and disinfect your home to remove germs: practice routine cleaning of frequently touched surfaces.
  • To the extent possible, avoid touching high-touch surfaces in public places – elevator buttons, door handles, handrails, handshaking with people, etc. 
  • Avoid groups/crowds.
  • Avoid all non-essential travel.
  • ​Protect the most vulnerable people, including elderly and those with existing medical conditions.

We encourage families to closely monitor information coming from trusted sources at the international, national, state, and local levels and to follow all the recommended guidelines and precautions for your location.  As always, please contact your healthcare provider if you have questions or concerns.
Updated Information:
Centers for Disease Control and Prevention
World Health Organization
FDA
NIH

Online Webinars and Resources:
Matthew's Friends:  Tips on Managing a Medical Ketogenic Diet During the Coronavirus Pandemic
Matthew's Friends:  Hospital Guidance for Those on Ketogenic Therapy
The Charlie Foundation:  A Well-Stocked Keto Pantry
DEE-P Connections (Developmental Epilepsy Encephalopathies):  Extensive COVID-19 Resources 
Epilepsy Foundation:   Resources    Webinar
CURE (Citizens United for Research in Epilepsy):  Webinar
Metabolic Support UK:    Webinar   Slides
Global Genes:  COVID-19 Resources
​National Organization for Rare Disorders (NORD) Information   Webinar Summary
Rare New England:  COVID-19 Comprehensive Resources
American Psychiatric Association:  Mental Health and Well-Being Resources for COVID-19
Child Neurology Foundation:  Back to School

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We send our very best wishes to the entire global community during this difficult time.