Adults with Congenital Limb Differences
by Amber Henson, on Mar 22, 2022
We have two types of patients who were born with upper limb differences – those who wore a prosthesis as a child and wanted to continue wearing one as an adult (such as Angel Giuffria); and those who did not wear a prosthesis as a child or who stopped wearing one, and as an adult decided that trying a prosthesis could be beneficial. For this article, we will be focusing on the second population of people with limb differences.
Our patient Mandie Tavares is a great example of someone who didn’t wear a device as a child but later wondered if a prosthesis could be helpful. As a small child, Mandie received a passive prosthesis with a cosmetic, skin tone cover, but it didn’t provide any hand function. “I didn’t really like it, so I didn’t wear it very often. When I was around 10 or 11, I got a myoelectric device, which was newer, but it only opened and closed, and I didn’t find it very beneficial.” From then until her 20s, Mandie felt like she didn’t need a prosthesis. “Then one day, I just kinda thought, ‘I feel like technology has advanced, I wonder what’s out there?’ So, I started my search for a new arm.”
Mandie now wears a bebionic hand, which offers a smaller hand that matches the size of her other hand. “I love that it helps me feel confident. It’s helpful and it’s also really cool. When I’m not wearing it, people say, ‘Oh, what’s wrong with you?’ When I have it on, people are like, 'Woah – tell me about it.’” But Mandie wears her prosthesis for more than just looks. “I like that it can help me in the kitchen, when I’m chopping things. Before, it was much harder to stabilize items and do the chopping, and so now, it helps me keep it still and it’s much easier to chop.”
Mandie also likes how her prosthesis allows her to help her daughter, Scottie. “When I’m helping her get ready to go or with doing things on the playground, it’s nice to have the extra limb and it’s just easier. Scottie loves it; she thinks it’s cool. When I first got it, she was a little taken aback by it, but then she decided it was awesome.”
What about incorporating a new device into your life when you’re already used to doing everything with just one hand? That’s where our clinical therapy specialists come into play. They are there throughout the fitting process to teach all our patients. Mandie again: “After not having a prosthesis for so long, I worked with a therapist. She showed me how to do things with my prosthesis. Even when I thought I was doing something in a way that worked, she would show me how to do it a different way and it would be easier, and everything would just flow. Working with a therapist was great because otherwise I would have had to figure it out on my own.”
Sometimes people choose to wear a prosthesis because they decide that technology has come far enough that the benefits are worth it. Others choose to wear a prosthesis because they have something new in their lives – a life-change like a new baby, or they take up a new occupation or hobby. Sometimes people decide to get a device due to overuse issues. That’s why Max Okun decided to try a new, customized prosthesis designed specifically for working out. He is a congenital amputee who wanted to be a personal trainer but was experiencing painful overuse issues. You can watch his story below:
For people with partial hand amputations, there are also activity-specific devices. Jonathan Boyd is a teenager with a congenital partial hand limb difference who wanted to be able to lift weights and workout without the pressure and discomfort that he was feeling with the absence of two fingers.
So, you’re interested in learning more about new prosthetic options, but now you’re wondering about whether your insurance will pay for it. That’s a good question. We have heard from our patients that sometimes insurance companies will respond to claims with something akin to, “Well, you’ve never needed a prosthesis before, why should we help pay for one now?” That is where our justification department comes in. These qualified and experienced team members have successfully helped many of our patients with congenital limb differences get insurance denials overturned and claims approved. You can learn more about how our justification team advocates for you or how we can help you advocate for yourself if your initial claim is denied. Our patient, Shaholly Ayers, talks about her insurance woes and eventual success in her patient profile video:
We hope you’ve found this article beneficial. If you’re interested in learning more during a free prosthetic evaluation – online or in-person – please contact us. Are you an adult with a congenital limb difference with advice for your peers? Please feel free to leave a comment below. Thanks for reading!
For more information, see related Arm Dynamics articles here: