Glut1 Deficiency Foundation
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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.

COVID-19 in Glut1 Deficiency Survey Results
report additional COVID-19 illness or vaccine experiences since the first survey
Message from Drew Hemlock Family

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, 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.

Glut1 Deficiency and COVID-19
Frequently Asked Questions with
​Dr. Juan Pascual

April 2020
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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.


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Glut1 Deficiency Foundation
PO Box 737 
Owingsville, KY 40360    
​info@G1DFoundation.org
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​​Resources and information on this website are not intended as medical care or advice.
​​Please consult with your healthcare provider.
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Copyright © 2021 Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Newly Diagnosed
    • Research >
      • Research Compass
      • Research News
    • Patient Registry
    • Resources >
      • Resource List
      • Videos
      • The Patient Voice
      • Cognition and Learning
      • Family Recommended Specialists
      • COVID-19
      • Patient Stories >
        • Family Stories >
          • Share Your Story
      • Materiales en Español
      • Brochures
  • About G1DF
    • About the Foundation
    • Leadership Team
    • Medical Advisory Board
    • Scientific Advisory Board
    • Educational Events and Exhibits
    • Ways to Help
  • News
    • Glimpses | The G1DF Blog
    • Foundation Newsletters >
      • Summer 2022
      • Spring 2022
      • Winter 2022
      • Fall 2021
      • Summer 2021
      • Spring 2021
      • Winter 2021
      • Fall 2020
      • Summer 2020
      • Spring 2020
      • Winter 2020
      • Fall 2019
      • Summer 2019
      • Spring 2019
      • Winter 2019
      • Fall 2018
      • Summer 2018
      • Spring 2018
      • Winter 2018
      • Fall 2017
      • Summer 2017
      • Spring 2017
      • Winter 2017
  • Conferences and Events
    • 2022 Scientific and Family Conference
    • Conferences and Events
    • Glut1 Gatherings on Zoom
  • Get Involved
    • Family and Professional Networks
    • Volunteer Network
    • UTSW Surveys
    • Sign Up for Our Mailing List
    • Ways to Give
    • Shop to Support
    • Donate
    • Love Some1 with Glut1 >
      • 2022 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate