Friday, September 28, 2012

CMT Awareness Month

No, not country music television but rather Charcot-Marie-Tooth disease. 

As part of Team Rev3 I’ve been lucky to have been exposed to many different causes.  In March/April I participated in the Run Across America for the Ulman Cancer Fund and now I get to tell you a little bit about a different cause, one I did not know much about until I was “introduced” via email to Donna.

CMT, Charcot-Marie-Tooth disease, is a neurological disorder affecting approximately 1 in 2500 Americans.  It is an inherited disease first identified in the 1800’s.  The disease affects the peripheral nerves which lie outside the brain and spinal cord and supply the muscles and sensory organs in the limbs.

What are the symptoms of Charcot-Marie-Tooth disease?
The neuropathy of CMT affects both motor and sensory nerves. A typical feature includes weakness of the foot and lower leg muscles, which may result in foot drop and a high-stepped gait with frequent tripping or falls. Foot deformities, such as high arches and hammertoes are also characteristic due to weakness of the small muscles in the feet. Later in the disease, weakness and muscle atrophy may occur in the hands, resulting in difficulty with carrying out fine motor skills (the coordination of small movements usually in the fingers, hands, wrists, feet, and tongue).

Onset of symptoms is most often in adolescence or early adulthood, but some individuals develop symptoms in mid-adulthood. The severity of symptoms varies greatly among individuals and even among family members with the disease. Progression of symptoms is gradual. Pain can range from mild to severe, and some people may need to rely on foot or leg braces or other orthopedic devices to maintain mobility. Although in rare cases, individuals may have respiratory muscle weakness, CMT is not considered a fatal disease and people with most forms of CMT have a normal life expectancy.  In fact, Donna, runs and has participated in triathlons for several years!

Where there isn’t a cure for CMT, but physical therapy, occupational therapy, braces and other orthopedic devices, and even orthopedic surgery can help individuals cope with the disabling symptoms of the disease. In addition, pain-killing drugs can be prescribed for individuals who have severe pain.

Physical and occupational therapy, the preferred treatment for CMT, involves muscle strength training, muscle and ligament stretching, stamina training, and moderate aerobic exercise. Most therapists recommend a specialized treatment program designed with the approval of the person's physician to fit individual abilities and needs.  Most therapists recommend low-impact or no-impact exercises, such as biking or swimming, rather than activities such as walking or jogging, which may put stress on fragile muscles and joints.

The point of this post isn’t to solicit donations but rather raise awareness for this disease.  I appreciate your reading this point and I know Donna does too.  However, if this cause inspires something in you, here are places you can receive more information and make a donation.

Here I am sporting my CMT shirt heading out for a run.