What is included in patient education about Charcot-Marie-Tooth (CMT) disease?

Updated: Feb 19, 2019
  • Author: Francisco de Assis Aquino Gondim, MD, MSc, PhD, FAAN; Chief Editor: Nicholas Lorenzo, MD, MHA, CPE  more...
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Answer

Answer

This is an important aspect of the long-term management of patients with CMT. Education helps them to cope with the progression of disability, and education leads to prevention of further nerve damage (eg, avoiding exposure to drugs/toxins with known deleterious effect on the peripheral nerves). Internet resources include sites such as the Charcot-Marie-Tooth Association in North America, which has patient support groups in most major cities, and the National Organization for Rare Diseases.

Patients are also well advised to acquaint themselves with the Americans with Disabilities Act (ADA). In most regions, organizations exist that advise patients on their rights in the work place and offer mediation between employees and employers.

Parents should also be advised to address issues of disability in their affected children with their teachers and school counselors. A fine line exists between expecting too much from a child and being overprotective, both for well-intentioned parents and for teachers alike.


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