While there is currently no cure or treatment for people living with CMT4J, there are therapeutic management strategies. There are also opportunities for participation in natural history studies, which can contribute to the community’s understanding of the disease. Information on the Natural History Study of CMT4J can be found here.

People living with CMT4J may require varying levels of support and assistive devices. Most likely, families will benefit from a team of healthcare professionals to help manage the progressive and, in some cases, rapidly severe impact of their disease. Useful specialists may include:

Low-intensity therapeutic management strategies may bring symptom relief. Individuals living with CMT4J could explore the following with their physical therapist:

  • Water (aquatic) therapy leverages dynamic resistance movements under water.
  • Home-based resistance programs that focus on improving strength related to daily life.
  • Stretching for maintenance and optimization of functional limb use, especially as weakness persists.
  • Pilates and yoga reinforce similar strategies; stretching and can be helpful with maintenance of muscle function.

A range of adaptive devices, equipment, and supportive interventions may become necessary for those living with CMT4J, depending on the severity of the disease.

Learn more about equipment, recreation, and support:

 

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The amount of supportive care an individual with CMT4J needs is typically relative to the age of onset and the severity of their disease. However, not all cases are as severe, and even severely-affected individuals can live independently with the help of adaptive devices. Home adaptations may also be helpful, and recommendations can be obtained through a physical therapist. Various levels of accessibility and support can help to cultivate independent living skills as symptoms progress.

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Sources:

  1. Nicholson, G., Lenk, G. M., Reddel, S. W., Grant, A. E., Towne, C. F., Ferguson, C. J., … Meisler, M. H. (2011). Distinctive genetic and clinical features of CMT4J: a severe neuropathy caused by mutations in the PI(3,5)P₂ phosphatase FIG4Brain: a journal of neurology134(Pt 7), 1959–1971. doi:10.1093/brain/awr148. Retrieved June 26, 2019, from link.
  2. Field research conducted by Neurogene and Ten Bridge Communications, July 2019.
  3. McCorquodale, D., Pucillo, E. M., & Johnson, N. E. (2016). Management of Charcot-Marie-Tooth disease: improving long-term care with a multidisciplinary approach. Journal of multidisciplinary healthcare9, 7–19. doi:10.2147/JMDH.S69979. Retrieved on June 26, 2019, from link.
  4. CMT. (n.d.). Retrieved June 26, 2019, from link.