Caring for GNE myopathy

Supportive care

Currently, there is no Food and Drug Administration (FDA) approved treatment that reverses or slows the natural progression of muscle weakness in GNE myopathy, also called Hereditary Inclusion Body Myopathy (HIBM).1,2

As a result, therapy is focused on managing symptoms such as muscle weakness and mobility issues. Supportive care likely includes assistive devices such as tailored bracing, ankle braces to correct foot drop (called ankle-foot orthosis, or AFO), canes, walkers, and wheelchairs; and physical and occupational therapy.1,3,4

A support team to help manage the symptoms of GNE myopathy includes many types of health care specialists, such as1,3:

  • Neurologists
  • Genetic counselors
  • Rehabilitation physicians called physiatrists
  • Physical therapists
  • Occupational therapists

Managing GNE myopathy does not have to be limited to disease symptoms. Taking care of your overall health is a proactive way to influence the long-term outcome of your disease. Physically, this may include healthy eating, light exercise, and mobility aids. Mentally, staying positive and speaking with a counselor or family member may help with coping.4,5

Community through advocacy

GNE myopathy advocacy groups can help you or your loved connect with others and get involved.
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References: 1. O’Ferrall, EK, Sinnreich, M. GNE-related myopathy. In: Pagon RA, Adam MP, Ardinger HH, et al, eds. GeneReviews®. Seattle, WA: University of Washington, Seattle, 2013. 2. Celeste FV, Vilboux T, Ciccone C, et al. Mutation update for GNE gene variants associated with GNE myopathy. Hum Mutat. 2014;35(8):915-926. 3. American Academy of Neurology. Summary of evidence-based guideline for clinicians: evidence-based guideline: diagnosis and treatment of limb-girdle and distal muscular dystrophies. 2014. 4. American Academy of Neurology. Summary of evidence-based guideline for patients and their families: limb-girdle and distal muscular dystrophies. 2014. 5. Narayanaswami P, Weiss M, Selcen D, et al. Evidence-based guideline summary: diagnosis and treatment of limb-girdle and distal dystrophies: report of the guideline development subcommittee of the American Academy of Neurology and the Practice Issues Review Panel of the American Association of Neuromuscular & Electrodiagnostic Medicine. Neurology. 2014;83:1453-1463.