Since she was diagnosed 28 years ago with a genetic disease that progressively diminishes her ability to control the muscles in her legs, Elisa Echevarria, of Land O’ Lakes, has known that maintaining her mobility and physical capability will always be a battle.
Echevarria is one of an estimated 120,000 people in the US who have Charcot Marie-Tooth disorder (CMT), a genetic condition that causes nerves in the extremities to degenerate and lose their ability to control the muscles. The nerve damage associated with Echevarria’s CMT makes it impossible for her to move her ankles or flex her feet when she walks—a condition known as foot drop. As her disease has progressed her condition has worsened, making balance difficult and leaving her prone to falls. “Just getting around is difficult and leaves me with little energy or ability to do normal activities with my 10-year-old son and husband. A family outing, like going to the park, or anything to do with walking, can be an exhausting task.”
To preserve as much of her mobility as she can, Echevarria has turned to advanced technology. She uses special orthotic braces on both legs that give her the necessary leg stability and position her feet at the correct angle for walking. The ToeOFF brand braces, manufactured by Allard USA, are made of technologically advanced carbon composites and are engineered to provide “spring” similar to that normally generated by the muscles of the legs and feet. Echevarria received the braces as a patient at Westcoast Brace & Limb, the Tampa-based orthotic and prosthetic company. “Without the braces, I was exhausted just trying to keep my balance enough to walk a short distance without falling,” Echevarria says. “Now, I have the stability and stamina I need to go and go and go. I feel like I have my legs back; the braces have changed my life.”
Greg Bauer, CPO and president of Westcoast, says, “We work with each patient to identify the best orthotic or prosthetic solution for their lifestyles and personal needs. It’s great to see how well Elisa is doing and we’re proud to have been a part of her journey.”
No one understands Echevarria’s experience more than Beth Deloria, Allard’s manager of community outreach. An avid marathon runner before foot drop threatened to sideline her in 2004, Deloria’s use of a brace similar to Echevarria’s has enabled her to resume her passion for distance running. “Just like Elisa, I know from personal experience the importance of preventing foot drop from taking away the things you want to do in life,” she says. “That’s what thousands of Americans are facing as they come to terms with foot drop—there’s an enormous emotional toll when losing the ability to control your foot and ankle muscles prevents you from getting around well enough to live your life.”
To call attention to the success people like Echevarria are experiencing in their fight to maintain mobility, Deloria is on a mission to run in 22 half marathon events across the US in 2012—a total distance of more than 300 miles. She has completed ten events so far, including the February 12 event in St. Petersburg.