Having a disease which few people can relate to or have even heard about throughout their lives is not simple to explain, especially for those afflicted by the disease. Charcot Marie Tooth also carries the unpopular belief that it is something related to teeth rather than nerves affecting muscle function and mobility, especially within the lower and upper limbs. In order to highlight the condition, the New York Times launched a series of interviews with 6 people of different ages and sexes, epitomizing their daily struggles with CMT and how it affects their lives and the lives of those around them.

One of the most common sentiments resounded by the 6 protagonists is that the disease was kept hidden from their family until they, themselves, were diagnosed with CMT. The main reason for his non-disclosure was the fear that the condition instigated in social life and the discrimination suffered by their genetic peers. Some of the 6, however, did not directly inherit the disease and found it more difficult to cope with it than others who were better prepared. Even today, CMT does not have the recognition it deserves or the respect it craves for.

The struggles and courage of these 6 individuals, who continue to face an uphill battle with the worsening symptoms throughout their lives, are nothing less than heroic and memorable. One couple’s choice to have 4 of their own children, knowing that the chances of them inheriting CMT was quite high, is noble enough to warrant praise – preparing the 3 children who did eventually contract CMT for their journey into the unknown is also a story in itself! Overcoming the daily burdens and actually feeling stronger in mind and spirit is something very few able-bodied persons can live up to, let alone those whose body is falling apart at the seams!

To read the article from the NYT click here. To listen to the interviews of the 6 CMT heroes click here.

Image URL:  http://www.cmtnyc.org/media/flash/images/01.jpg



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