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What is GNE myopathy (also known as HIBM or DMRV)?

GNE myopathy is also known as hereditary inclusion body myopathy (HIBM), distal myopathy with rimmed vacuoles (DMRV) or Nonaka myopathy.  GNE myopathy is a severe, adult-onset muscle disease caused by a deficiency of an enzyme in the first step of sialic acid biosynthesis needed for the modification of proteins and fats.  Patients with GNE myopathy/HIBM typically show progressive muscle weaknesses around 20 to 30 years of age.  Over the ensuing 10 to 20 years, many patients progressively lose significant functional ability and become wheelchair-bound.  There are no current treatments for this disease.
   

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