GLUT-1 Deficiency Syndrome

raising awareness, sharing experience

We are a family in the UK whose youngest member received a diagnosis of Glut-1 DS in 2009. Our blog has our story so far

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Useful links...

MatthewsFriends.org is based in the UK and has a great deal of information concerning the Ketogenic Diet - an important treatment for Glut-1 DS.

CharlieFoundation.org is a based in the US and also provides information on the Ketogenic Diet, together with case studies & more.

Glut 1 DS Yahoo Group is a support group for family & friends of people with this condition.

Our son was born in 1994 and his condition has remained undiagnosed until we received this surprising news in October 2009. It is a huge relief to have the diagnosis, and we hope find a treatment to help to manage his condition. We have created this site to try and help raise awareness about Glut-1 DS, to share the information we learn, and hopefully to learn from others.

Because of the importance of early diagnosis, we hope to help to raise awareness of Glut-1 DS to ensure that more children can be helped at an early age.

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