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 has been diagnosed with CMT also shares his experience when his child was diagnosed.
The Charcot Marie Tooth Association (CMTA) publishes My Child Has CMT: A guide for parents of children with Charcot-Marie-Tooth. Pubilcation was supported by a grant from the Pennsylvania Department of Health. Pat Dreibelbis, former 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 social networking on Facebook, and hosts conferences. Recently, the CMTA revised its website.
This guide can be found on the CMTA website in the CMTA store (see web address below). A print copy may order one from the CMTA for $8.00 if you are a member of the CMTA. The cost for nonmembers is $10.00.
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 to be particularly useful.
Charcot Marie Tooth Association website, (n.d.). Retrieved 9/8/15 from http://www.cmtausa.org/ .
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. Retrieved 9/8/15 from http://www.cmtausa.org/product-category/publications/ .
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. Available as a free download at http://www.mda.org/publications/learning/ .