CMT Awareness Month Kicked Off September 1 – Devastating Disease Affects 1 in 2,500
by Rebecka Hoyt, Editor & Photographer
One in 2,500 people—3 million people worldwide—have the degenerative neuromuscular disease Charcot-Marie-Tooth (CMT) and many of them don’t even know it. That means that in our town alone, 1.68 people have the disease. And that’s why the Charcot-Marie-Tooth Association is kicking off CMT Awareness Month September 1: to make the public aware of the symptoms of CMT so that those with the condition can be identified for early treatment.
Charcot-Marie-Tooth (CMT) is a progressive disorder of the peripheral nerves that causes people to lose the normal use of their feet and legs. Symptoms include: foot deformity (very high arched feet) and foot drop (inability to hold foot horizontal); a slapping gait (feet slap on the floor when walking because of foot drop); loss of muscle in the lower legs, leading to skinny calves; numbness in the feet; and difficulty with balance. Hands and arms may also be affected.
The Charcot-Marie-Tooth Association (CMTA) is a patient-led nonprofit whose mission is to cure this incurable disease. It does so with an aggressive, multipronged attack on the disease, bringing together a group of top-flight researchers and experts and directly funding their work. The CMTA launched the Strategy to Accelerate Research, or CMTA-STAR, in 2008 to capitalize on breakthroughs in genetics and dramatically speed up the pace of CMT research. Since then, the CMTA-STAR Initiative has made great strides toward developing treatments for CMT.
Throughout the month of September CMT patients will be walking, biking and swimming in support of STAR. The CMTA will share videos of patients in the news and interviews with five of our research partners. Participants are also urged to share their stories live on Facebook and to buy a $5 STAR for their CMT STAR.
Our daughter, Julie who just turned 12, was diagnosed with CMT1X when she was in 2nd grade. There are many forms of CMT, however, a genetics test and an EEG will help you to know which one you have. On both sides of our family CMT is present, just not in every generation as it can skip generations. In her early childhood years, she would have falls that were caused by her balance, has high foot arches, and minimal trembling in her hands when she writes. Orthotics in her tennis shoes have helped her balance tremendously and her falls have decreased. A year ago, she started to wear night splints that were custom-made to her feet and calves to help with foot drop in hopes to avoid future surgery on her tendons. She says that her night splints, “Are really annoying!”
She sees a pediatric neurologist once a year at Helen DeVos Children’s Hospital and is evaluated by a physical therapist. Orthotics specialists are also involved to evaluate the use of her night splints to see if any necessary changes are needed.
Julie tries to stay active so that she can keep her muscles moving and stay strong. She likes to play golf, floor hockey, swim, and do stretches.
For more information, contact: Rebecka & Tom Hoytemail@example.com/269-697-9874