SEATTLE, Wash. (Ivanhoe Newswire)— Charcot-Marie-Tooth disease, or CMT, is a disorder that affects the sensory and motor nerves in the arms, hands, feet, and legs. Muscle weakness, balance problems, and foot deformities are common in people who have CMT. There is no cure, but now, details on how one woman was able to find relief for her symptoms.Personalized CMT braces
Thirty-year-old Julie Stone works her muscles hard and she helps others do the same through her virtual fitness classes.
“I want everyone to just tune in with their bodies and make the best of their workouts,” shared Stone.
But a few years ago, Julie’s lower-limb muscles were weakening. She tripped and broke her foot twice. She had bad foot drops.
“Your foot kind of just flops as you’re walking and it just causes you to take really big, overexaggerated steps,” Stone recalled.
She was diagnosed with CMT, a hereditary neuromuscular disease. She went to doctor after doctor but couldn’t find a brace that fit to relieve her symptoms while continuing her active lifestyle. Then Eric Weber from the Hanger Clinic suggested an AFO, or ankle-foot orthosis.
“An AFO is trying to prevent a foot that is weak from dragging on the ground or tripping,” described Eric Weber, LCPO, FAAOP, a national orthotics specialist at Hanger Clinic.
Since every CMT case is different, Weber custom-designed a brace for Julie, personalized CMT braces.
“Where we were able to redirect some of the forces that are acting upon her when she’s walking and redirect those forces so that it keeps her balanced,” illustrated Weber.
Julie struggled walking before the AFOs. Now, with the custom braces she is able to take her pup Kiera for longer walks.
“Not have to stare 100 percent at the ground being like, ‘am I going to step on something?’” Stone expressed.
And she’s able to stay active and climb to new heights.
Since CMT progresses gradually, symptoms may not show up until someone is in their twenties or thirties. There are different subtypes of CMT and people with most forms of CMT typically have a normal life expectancy.
Contributors to this news report include: Cyndy McGrath, Executive Producer; Milvionne Chery, Field Producer; Rusty Reed, Videographer; Roque Correa, Editor.
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Sources:
MEDICAL BREAKTHROUGHS
RESEARCH SUMMARY
TOPIC: PERSONALIZED CMT BRACES MAKE JULIE STRONGER!
REPORT: MB #4849
CHARCOT-MARIE TOOTH DISEASE (CMT): Charcot-Marie-Tooth disease is an inherited disorder that causes nerve damage. The damage is mostly in the arms and legs. Charcot-Marie-Tooth disease is also called hereditary motor and sensory neuropathy. It results in smaller, weaker muscles and you may experience loss of sensation, muscle contractions, and difficulty walking. Foot deformities such as hammertoes and high arches also are common. Symptoms usually begin in the feet and legs but may eventually affect the hands and arms. The symptoms of Charcot-Marie-Tooth disease typically appear in adolescence or early adulthood but may also develop in midlife. It occurs when there are mutations in the genes that affect the nerves in your feet, legs, hands, and arms and sometimes, they damage the nerves. Other mutations damage the protective coating that surrounds the nerve. Both cause weaker messages to travel between your extremities and brain which means some of the muscles in your feet may not receive your brain’s signal to contract, so you are more likely to trip and fall. Your brain may also not receive pain messages from your feet.
DIAGNOSING CMT: Your doctor may check for signs of muscle weakness in your arms, legs, hands, and feet, decreased muscle bulk in your lower legs that results in an inverted champagne bottle appearance, reduced reflexes, sensory loss in your feet and hands, foot deformities and other orthopedic problems. Your doctor may also recommend tests including nerve conduction studies which measure the strength and speed of electrical signals transmitted through your nerves, an electromyography (EMG) that will allow your doctor to determine the distribution of the disease by testing different muscles, a nerve biopsy where a small piece of peripheral nerve is taken from your calf and a laboratory analysis distinguishing Charcot-Marie-Tooth disease from other nerve disorders.
ANKLE, FOOT ORTHOSES (AFO’S) HELPING CMT PATIENTS: The use of ankle and foot orthoses such as braces, or other special devices to correct alignment or provide support can help improve the gait and balance of patients with Charcot-Marie-Tooth disease. Eric Weber, National Orthotics Specialist with the Hanger Clinic states, “AFO or ankle, foot orthoses, are specifically designed to assist or prohibit specific movements from the middle of the calf all the way through the foot, specifically with CMT. It is goal and task oriented and tailored to the patient. Specifically, the AFO is trying to prevent a weak foot from dragging on the ground. Further, it assists with standing balance and prevention of falls while standing. Also, it assists in correcting certain alignments and preventing maligned joints from forming. There is research now and medicine surrounding CMT, but in the current environment there is not any great pharmaceutical option. The treatments tend to be in the therapeutic rehab and orthotic world. So, the ability to communicate needs and respond accordingly from both the patient and orthotist is key.”
FOR MORE INFORMATION ON THIS REPORT, PLEASE CONTACT:
MEGHAN WILLIAMS
If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marjorie Bekaert Thomas at mthomas@ivanhoe.com.
