Glut1 Deficiency Foundation
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My EAN Experience

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First of all, I would like to thank the Glut1 Deficiency Foundation for kindly inviting me to be part of this amazing experience and for giving me the opportunity to be an advocate for Glut1 DS. 
 
Throughout the experience, I felt different kinds of emotions:  most of the time overwhelmed - from happiness and pure joy, just for being there and having the chance to give a voice to all the Glut1 patients worldwide; to some sort of disappointment every time a physician came in to the booth and showed lack of interest in our cause but surprisingly very interested in the goodies we had to offer (luckily only a few ones) or even felt sad when a representative from the African Academy of Neurology told me that there might be, most probably, cases in Africa, but unfortunately they don’t have adequate means to diagnose the disease. 
 
I felt very fortunate for being able to talk to physicians from different countries and continents and explain to them, from a patient perspective, what it is like to have and live with Glut1 DS, since there isn’t much information available about it. 
Sharing with them my personal experience seemed to be very interesting for them, since it enabled them to compare it with their own patient experiences (e.g. Glut1 DS patient symptoms may change in the course of time, it always depends on every single case, since it is a rare disease and we don’t have all the same symptoms) for better understanding of what could be common or not so common symptoms. 
 
I only wish I could be a more active member for the Foundation but unfortunately we are an ocean apart which does not allow me to participate as much as I want to.
 
I know that great news will come for all of us in the near future. 
Hope is the force that moves me forward.
 
Teresa Lamas
25 years old
 Portugal
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Glut1 Deficiency Foundation
PO Box 737 
Owingsville, KY 40360    
​info@G1DFoundation.org
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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 News >
        • Research Grant Program >
          • Research Grant Award Recipients
      • Recent Publications
      • Patient Registry
    • Resources >
      • Cognition and Learning
      • Videos
      • Resource List
      • Family Recommended Specialists
      • Patient Stories >
        • Stories >
          • Emily
          • Bobby
          • Lilly
          • Allison
          • Katie
          • Tessa
          • Justin
          • Whitney
          • Ryan
          • Erik
          • Pattygrace
          • Chris
          • Sam
          • Collette
          • Phil
          • Joshua
          • DeAndre
          • Matt
          • Jayden
          • Brittany
          • Macie
          • Braden
          • Dalton
          • Jordan
          • Joelle
          • Sabrina
          • Thomas
          • Haley
          • Reed
          • Ben
          • Parys
          • Ronnie-Louise
          • Colin
          • Nathan
          • Lee
          • Dominic
          • Raina
          • Dylan
          • Brayden
          • Elli
          • Jacob
          • Rian
          • Hailey
          • Olivia
          • Addie
          • Drake
        • 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
    • COVID-19
    • CZI Rare As One
    • Foundation Newsletters >
      • 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
    • Conferences
    • 2021 Conference - San Diego
    • 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 >
      • 2021 Love Some1 video
      • 2021 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate