Glut1 DS community

Glucose Transporter Type I Deficiency Syndrome (Glut1 Deficiency, Glut1 DS, G1D, or De Vivo Disease) is a genetic disorder that impairs brain metabolism. Patients with Glut1 Deficiency have insufficient cellular energy to permit normal brain growth and function.

Glut 1 in Norway

Written by mummy_of_two, published 7 months ago.

In Norway there are 13 known persons with Glut 1, and two of them are mine!

I'm a mummy of two adult girls who have been incorrectly diagnosed for 34 years. One month ago, I had a phone call from my girls doctor who told me that both have a new diagnosis called Glut 1. And, we can treat it!

I felt like I was climbing both Mount Everest and the K2 in one trip.

My girls are 34 and 29 years old, and I hope to start with the ketogenic diet in January.

Is there anybody out there who have experience with treatment in their age? Please send me some words about your experience.

Best regards,
Mummy of two

Written by mummy_of_two, published 7 months ago.

One comment for «Glut 1 in Norway»

[ Expand all ]

Leave a comment

You must be registered and signed in to leave a comment. Sign in now.

Glut1 DS Recent Activity

  • -

    new clinical trial for Glut1 Deficiency patients (C7 or triheptanoin)
    topic, published 19 days ago

    show transcript

    Hi all,

    Dr. Juan Pascual at UT Southwestern has asked the Glut1 Deficiency Foundation to share information about the opening of the C7 clinical trial for patients with Glut1 Deficiency. All approvals are now in place and the study is officially open!

    I know this is great news for everyone w...

  • -

    GLUT1 deficiency
    topic, published 25 days ago

    show transcript

    Hello, I am Vincenzo's Mum, an 8-year-old who just a year ago was diagnosed with your illness, glut 1 deficit and , for around a year, has been on a ketogenic diet. I must say that he has grately improved coordination and balanc wise. Now he can run without feeling so tired to have to sit down t...

  • -

    phlexyvits
    topic, published 25 days ago

    show transcript

    our son has been following a ketogenic diet for 4 months now, with a complement treatment of phlexyvits vitamins. The problem is that they are big pills that he cannot swallow...

    Does someone know if the same medicine is available as a powder, and also non-effervescent calcium?

  • -

    Question by email from Italy...
    topic, published 2 months ago

    show transcript

    Hi,

    I just received the following text in Italian and had it translated to English using our translation service.
    If you have any response, you can post it here, and I will make sure the person who wrote the email can access the text and have it translated into Italian.

    Thanks,
    Rob

    ...

  • -

    Glut1 story from Scotland
    topic, published 3 months ago

    show transcript

    HI,
    Wanted to share this great article about a great family helping educate and spread awareness:

    http://www.arbroathherald.co.uk/news/local-headlines/mum_highlights_need_1_2107400

    Thanks to the Watsons!

  • -

    Glut1 DS in Greece
    topic, published 4 months ago

    show transcript

    Hi Allie,
    it' s me again!
    we' ve already have an excellent neuro and a dietician that began the ketogenic diet. But my brother's baby its the only baby in Greece and I would like another opinion. He drinks in bottle Ketocal (ratio 4,5:1, 2ml liquigel and superamine with carnitine). He started...

  • -

    FAST FACTS ABOUT GLUT1 DS
    document, published 4 months ago

    show transcript

    Summary of mechanisms and terms involved in Glut 1 Deficiency syndrome in lay language.

  • -

    Sanford Rare Disease Day Symposium - February 25th
    topic, published 4 months ago

    show transcript

    Thanks to the Wienk family, the Glut1 Deficiency Foundation will have an exhibit booth at Sanford's 2nd annual Rare Disease Day Symposium on February 25th. Visit the link below to find out more and to see an agenda of the day's discussions:

    http://www.sanfordresearch.org/ClassLibrary/Page/Ima...

  • -

    ❤ Some1 with Glut1 Rare Disease Day Campaign
    topic, published 4 months ago

    show transcript

    Hello,

    The Glut1 Deficiency Foundation is hosting a ❤Some1 with Glut1 campaign in conjunction with Rare Disease Day. You can read more about the campaign by following the link below:

    https://g1dfnd.ejoinme.org/?tabid=333204

    If you are interested in participating, please contact Glen...

  • -

    Glut 1 Foundation Winter Newsletter
    topic, published 4 months ago

    show transcript

    Online here:
    http://www.g1dfoundation.org/g1dfoundation.org/Home_files/winter%20g1d%20news%20copy%20web.pdf