Whenever a child receives a diagnosis of neuromuscular disease, the child’s parents will have many questions, concerns, and emotions regarding the new diagnosis. The parents of a child diagnosed with Charcot Marie Tooth disease (also sometimes called) will be no exception. The publication My Child Has CMT: A guide for parents of children with Charcot-Marie-Tooth can help to answer the many questions parents will have, and will help parents to connect their child with treatment and resources.
This guide includes sections describing CMT, answering common questions parents have about CMT and explaining how to keep a medical record for a child affected by CMT. It also defines common medical terms parents are likely to hear, and gives parents the information they need to locate the services and resources available for children with CMT.
What I most appreciate about My Child Has CMT, however, is that this guide goes beyond simply providing important facts about CMT. This guide discusses the emotions a parent will be likely to experience and how to cope with these emotions. The parent of a child who with CMT also shares his experience when his daughter was diagnosed.
The Charcot Marie Tooth Association (CMTA) publishes My Child Has CMT: A guide for parents of children with Charcot-Marie-Tooth, supported by a grant from the Pennsylvania Department of Health. Pat Dreibelbis, Director of Program Services for the CMTA, edited the guide. The CMTA also publishes a bi-monthly newsletter and other publications regarding CMT, funds research through their Strategy to Accelerate Research (STAR), coordinates a network of support groups, and hosts conferences. Most recently, the CMTA revised its website, and now offers an online community including online support groups, as well. See the Resources section below for the website address.
This guide can be found on the CMTA website, and can be downloaded as a .pdf file at no cost under the My Child Has CMT tab. You will find the address for this document underneath this article in the Resources section. Those who prefer to have a printed copy may order one from the CMTA at a low cost (five dollars).
I highly recommend this booklet to any parent who has a child who has been diagnosed with Charcot Marie Tooth disease. Parents of newly diagnosed children will find My Child Has CMT: A guide for parents of children with Charcot-Marie-Tooth
Charcot Marie Tooth Association website, (n.d.). http://www.cmtausa.org/ . Retrieved 2/2/10.
Dreibelbis, P. (ed.), (n.d.). My Child Has CMT: A guide for parents of children with Charcot-Marie-Tooth. Charcot Marie Tooth Association: Chester, PA.
http://www.cmtausa.org/index.php?option=com_content&view=category&layout=blog&id=4&Itemid=29 . Retrieved 2/2/11.
Parents of a child with Charcot Marie Tooth or other neuromuscular disease will also find the following publication, available free download from the Muscular Dystrophy Association (MDA) website, to be useful, as well:
Muscular Dystrophy Association, (2006). Learning to Live with Neuromuscular Disease: A Message for Parents.
http://www.mda.org/publications/learning/ . Retrieved 2/2/11.