Charcot Marie Tooth (CMT)

What is Charcot Marie Tooth (CMT)?

Charcot-Marie-Tooth, or CMT, is the most commonly inherited peripheral neuropathy and is found worldwide among all races and ethnic groups. Discovered in 1886 by three physicians, Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth, CMT affects an estimated 2.6 million people. For more information about Charcot Marie Tooth Disease click here.

Click here for Charcot-Marie-Tooth: A Practical Guide

Medications to avoid

The Charcot-Marie Tooth Association provides a list of medications that are potentially toxic to people with Charcot-Marie-Tooth disease. Please click here for the full list. 

Pain Management in CMT

People with CMT have very variable presentations with regards to pain. Some people report no pain at all, while others struggle to keep on top of their pain levels with the medications that are available. 
Use this useful website to find resources for pain management, exercise and healthy living.

Foot care for people with CMT

A Practice Brief focusing on foot care for people with Charcot-Marie-Tooth disease (CMT) has been developed by Professor Josh Burns and the Centre of Research Excellence in Neuromuscular Disorders. The resource is especially designed for frontline allied health clinicians such as Podiatrists, Physiotherapists, Orthotists and Pedorthists and is available from the MDA's website.

What does the Practice Brief provide?

  • A description of CMT signs and symptoms.
  • Tips for facilitating diagnosis for an individual showing signs and symptoms of CMT.
  • Strategies for regular care of the feet and ankles of someone with CMT, including stretching interventions and recommendations for foot and ankle orthoses.
  • Key sources of information and support for people with CMT and their treating health professionals.

For Health Care Professionals

CMTPedS calculator now online!

The Centre of Research Excellence in Neuromuscular Disorders has a calculation tool to measure the level of disability in children with Charcot-Marie-Tooth disease (CMT).

The CMTPedS Calculator is a user-friendly online tool developed to support the CMT Pediatric Scale, which collects validated measures of strength, dexterity, sensation, gait, balance, power and endurance to establish severity of disease and monitor changes over time in children with CMT. It can also be used to evaluate outcomes in studies of existing or new treatments for CMT.

Clinicians and researchers can enter patient data live into the CMTPedS Calculator to rapidly determine disease severity and generate a clinical report for patient correspondence and records.

The CMTPedS site features links to the CMTPedS validation paper in Annals of Neurology, as well as training resources and videos of how to use the CMT Pediatric Scale and calculator.

Click here to Sign In

Useful Websites 

Charcot-Marie-Tooth Association (USA)

Charcot-Marie-Tooth (UK)

Hereditary Neuropathy Foundation (USA)

Support Groups

CMT Disease New Zealand (Online)

This is a closed group for so to be added you will need to message the group. Search for CMT disease New Zealand on Facebook or click here

CMT Group (Face To Face)

Open invite to MDANZ members to join the Christchurch CMT support group who meet in the Northland Mall once a month. Members with other conditions are also welcome. Contact Paul Arthur on 03 354 3943.

Q&A: Here is where we answer some of our members questions. If you have any questions please email them to [email protected] and we will endeavour to answer them.