Charcot-Marie-Tooth Disease (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. 

The MDA members with Charcot-Marie-Tooth (CMT) Pain Management Suggestions

The MDA members who live with CMT have chosen to share their experiences managing pain with others.  When collating feedback it was identified that 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. Please click here to be taken to the full document.

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.

 

Useful Websites 

Charcot-Marie-Tooth Association (USA)

Charcot-Marie-Tooth (UK)

Hereditary Neuropathy Foundation (USA)
The Foundation To Support Those Living With Charcot-Marie-Tooth

Vaccination Recommendations

Click here to be taken to the vaccination page.

Respiratory Care

Click here to be taken to the respiratory care page.  

Support Groups

Check out the support groups page to see what is available in your area.

Q&A

Here is where we answer some of our members questions. If you have any questions please email them to info@mda.org.nz and we will endeavour to answer them.

Work Related Questions

What can I do if typing becomes difficult?

There are options available such as using voice recognition software or a touch screen tablet/ipad using a program called 'SWYPE'  All you have to do is run your finger up and down the keys and stop on the one you want.  You don't have to lift your finger off the glass.   

Another suggestion is to have a workplace assessment with an occupational therapist. Who can then make recomendations on specific equipment that might help. This can usually be arranged via your employeer or can be paid for privately. 

A company that sells aids is calles Zabonne www.zabonne.co.nz and may have some useful items.

THIS PAGE WAS REVIEWED 19 FEB 2016