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What is GNE Myopathy / HIBM?

How Do I Know if I am a Carrier?

How Do I Know if I am a Carrier?

GNE Myopathy is an autosomal recessive disorder, which means that the parents of someone affected by GNE Myopathy are carriers of the disease. Carriers are not affected by the disease, which means that their bodies function normally. But when two carriers have a child, there is a 25% chance with each pregnancy of having a child who actually has GNE Myopathy, there is a 50% chance that each child will be a carrier like his or her parents (and not have the disease), and there is a 25% chance that each child of the couple will not carry any mutation for the disease (meaning that he or she will not be a carrier nor will he or she have the disease).

Testing is anonymous and can be performed with a painless cheek swab.  

For testing see your physician, contact the Open Medicine Institute or see list of physicians familiar with GNEM/HIBM