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, treatments, and vaccines, the risk for symptoms and serious complications from illness should be weighed against any potential side effects from treatments or vaccines. 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.
To help better understand the experiences of our patient community with both COVID-19 illness and vaccines, we conducted a community survey in October 2021 and shared the results at our Fall Parent Glut1 Gathering on Zoom. You can find the slides with survey results below.