Charcot-Marie-Tooth disease (CMT), is a rare neurological condition. It’s hereditary, and it affects the way nerves communicate with muscles. There are different types of CMT, determined by which genes are abnormal. While there is currently no cure, there are various therapies, orthopedic devices, and drugs which can help patients cope with the diagnosis.
Although a rare condition, CMT is the most common of all inherited neurological disorders. But even so, there are many misconceptions about the disease. Here is one patient’s take on the different myths associated with the condition.
Myth vs. Fact
Jill Price was inspired to document the myths she’s heard about CMT after trying to explain the condition to a new doctor. Here’s her list, which was publish in Charcot-Marie Tooth News:
Myth #1
When some people first hear about the condition, they hear the words “shark” and “teeth” instead of “charcot” and “tooth.” This was exactly what happened when Jill first told her new doctor about her CMT diagnosis. In fact, this disease has nothing to do with shark or teeth. Its name comes from the physicians who discovered the disease- Jean Charcot, Pierre Marie, and Howard Tooth.
Myth #2
After hearing about CMT, some people assume that the condition impedes patients’ ability to live a normal life. Since the condition varies in severity, this statement will be more or less true for different people. However, with therapy, many patients can live a fairly typical life.
Jill explains that her brother has a more severe form of CMT than she and her sister do, but assisstive devices can help tremendously in terms of coping with the condition.
Myth #3
The third myth Jill documents is that there is a cure for the condition. While we all wish this weren’t a myth, the statement is unfortunately false. That said, researchers are hard at work investigating potential treatments, and with any luck- this won’t be a myth for long.
Myth #4
The only way to get CMT is if your parents have the condition. This is MOSTLY true, but there are rare forms of the condition caused by a spontaneous genetic mutation.
If someone has CMT, the likelihood their child will have the condition is somewhere between 25% to 50%.
Myth #5
The last myth Jill listed is the belief that everyone with CMT experiences it in the same way, especially if they’re related. Actually, symptoms vary greatly from person to person. Some may feel weakness in their extremities, experience a loss of sensation in their toes, or have reduced reflexes. Some patients also encounter hearing loss or scoliosis.
Even for Jill and her sister, who both have the same form of CMT (CMT1A), have different symptoms. Jill has issues with balance and deals with weak ankles while her sister does not. They both have high arches in their feet, but Jill has more severe hammertoes.
Jill shares her experiences with the hope of clearing up some of the misconceptions about CMT and spreading awareness about the real aspects of the condition. With more awareness, we can also hopefully speed up research for the disease, bringing the community closer to a cure.
You can read Jill’s full story and more about Charcot-Marie-Tooth disease here!
