COVID-19 Resources
navigating the new realities
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.
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.
Experts from our Medical Advisory Board have reinforced the importance of everyday precautions to help prevent illness and spread:
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.
- 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, especially in poorly ventilated areas.
- 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
Epilepsy Foundation: Resources
Global Genes: COVID-19 Resources
National Organization for Rare Disorders (NORD) Information: Resources
American Psychiatric Association: Mental Health and Well-Being Resources for COVID-19
We send our very best wishes to the entire global community during this difficult time.
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
Epilepsy Foundation: Resources
Global Genes: COVID-19 Resources
National Organization for Rare Disorders (NORD) Information: Resources
American Psychiatric Association: Mental Health and Well-Being Resources for COVID-19
We send our very best wishes to the entire global community during this difficult time.
