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Anne - CDG(transferrin)

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Anne,

you are the first person since our diagnosis of CDG with secondary mito to ever post about the transferrins..

we were told several years ago( 2000 ) that we has a disorder of glycosylation with a secondary mitochondrial disorder and one kid with a fatty acid defect also.

where did you have the transferring test done?

we were tested in San Diego by two docs and then the labs were sent to belgium to hte very man that founded the CDG syndromes.

I would love to hear more from you as you would be the second one with this diagnosis.

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