By Vanessa Orr

According to the Amputee Coalition, approximately 5.6 million people in the U.S. have experienced limb loss or limb difference, either having been born with a difference in a limb or having one removed for medical reasons or trauma. While there is no national recognition day, Florida and several other states recognize Limb Loss and Limb Difference Awareness Month (LLLDAM) in April to help raise awareness, celebrate amputees’ resilience and advocate for their needs.

“Education and awareness are critical,” said Hanger Clinic Business Development Manager Lizbeth Uzcategui, who serves as the AMPOWER® visitor/coordinator for southeast Florida. “This process is not easy. People feel lost and lonely, and getting them together with others who can help is critical.

“Whether a person woke up after an accident and their limb was gone, suffered from a disease for several years that resulted in amputation or had a baby that has a limb difference—it’s hard to find the courage, resilience and strength you need to move forward,” she added.

AMPOWER is a peer-to-peer support program that provides opportunities for peer mentorship, education and community and consists of a nationwide network of trained peer mentors who have successfully recovered and rehabilitated following amputation. AMPOWER also collaborates with community partners who specialize in amputations, prosthetics and orthotics to provide additional resources, especially related to new technology and advocacy.

For example, AMPOWER worked with Hanger Clinic to demonstrate to different insurance companies how people at home (K1 ambulators) could benefit from certain forms of technology that were previously only given to those with more active lifestyles (K3 ambulators).

“Insurance companies were not recognizing that people ambulating at home could benefit from this technology, which could reduce falling and save expenses down the line,” explained Uzcategui. “When Medicare recognized this, it was a huge win. But it was only made possible through our collaboration with scientists, doctors, patients and more.”

AMPOWER holds monthly activities, educational events and support groups in South Florida to help those with limb loss or limb difference learn how to reincorporate back into society, celebrate their triumphs and support each other, according to Uzcategui, who is an amputee herself and wears bilateral prostheses.

“We hold gatherings once a month to discuss things patients need help with, like finding the right therapist or finding different activities in the community or what to do if a prosthesis doesn’t fit well,” she explained. “We want to give them a clear plan to get to the next level.”

AMPOWER also holds social events such as Sunsets at the Beach, where those with limb loss can take advantage of accessible paths to the beach and beach wheelchairs to gather together. A much larger event, Get Unstuck, is held at the end of April and helps people identify why they get stuck and how to break through those limitations. There, they can try new activities like riding adaptive bikes or playing pickleball or basketball designed for players with prosthetic limbs.

While some limb loss is genetic or birth-related, the Society of Interventional Radiology reports that approximately 70 percent of amputations are caused by vascular disease. Roughly 29 percent are caused by trauma and the rest by cancer.

“Every day, 507 people in the United States lose a limb,” said Uzcategui. “That number is really scary.”

Because limb loss affects more than just the amputee, AMPOWER invites families to educational events to learn more about how they can help their loved ones and what to expect in the coming months and years.

“The loss of a limb is a loss for everyone around the patient; their lives are changed,” explained Uzcategui.

Through AMPOWER’s help, patients are able to return to independent lives. “Being able to confidently shake someone’s hand or cut your own meat at a restaurant may seem trivial to someone with both hands, but it’s not for someone like me,” said Uzcategui. “When I meet these people right after surgery, they’re lost, but seeing the smiles as they accomplish more and more is so exciting.”

Sidebar

So Every BODY Can Move

So Every BODY Can Move is an initiative to provide greater access to specialized orthotic and prosthetic care used for physical activity. The initiative outlines the need for insurance coverage of medically necessary prosthetic limbs and custom orthotic braces designed to enable individuals with limb loss and limb difference to participate in exercise, recreation and physical activities.

“It’s not fair that because of insurance issues, people only have access to basic prosthetic or orthotic devices,” said Uzcategui. “Imagine a little one born with a leg limitation who isn’t given a running prosthesis. Why should they have to sit down when all of their friends are running?

“We all need to have access to insurance coverage to use prosthetic devices recreationally. It shouldn’t be a luxury; it should be a right.”

The organization’s five-year goal, 28×28, is to enact So Every BODY Can Move legislation in 28 states by the 2028 Los Angeles Paralympics in order to then pursue federal, nationwide reform.

To find out how you can help, visit www.soeverybodycanmove.org.