Faith’s journey started early. She has a congenital limb difference below her elbow, and her parents had her fit with a prosthesis as a baby, from a different prosthetic care provider. “They said that it didn't go super well because I would just take it off and chew on it and just, like, hit things with it. I still have it. It's itty bitty and kind of cute, but chewed on.” Faith’s pediatrician told her parents to give it time and see how it went. When Faith was 16, she began to rethink the idea of having a prosthesis. “I started to think it would be awesome to have an additional tool to hold things in everyday life. On top of that was the visual aspect of having a prosthesis. I found that I felt a lot more comfortable wearing my prosthetic when I was out in public, even though I wasn’t a big fan of the body-powered device I had because the strap got in the way a lot. My other prosthesis, a passive cosmetic restoration, didn’t offer me the function that I wanted.”

But then Faith found some inspiration. “I follow this woman named Angel Giuffria on Instagram. I remember finding her for the first time and learning she was also a congenital amputee, and then following her and just being in awe about her bebionic hand. Being in awe about all the things that she was doing, and I thought, oh my gosh, I would love that. And so, she was my inspiration into looking into myoelectrics devices.” But Faith soon found that myoelectrics were expensive and more difficult to get her insurance to cover than other prosthetic options. “That was probably the biggest hurdle in my prosthetic journey  affordability with my insurance, which didn’t seem interested in wanting to cover anything. I did meet with Arm Dynamics at their Kansas City center, and I was just so impressed with the prosthetist, Julian, and the team and just everyone, and I wanted to go with them so bad. But my insurance at the time was terrible. So, it took me about two years to get one, and when I was approved, it wasn’t through Arm Dynamics. It wasn’t fully approved  I did have to fundraise to get it. But I did get my bebionic, and I did find it super helpful. I used it for seven years.” But as helpful as it was, it wasn’t ideal. “I know now my fit was not the best it could have been.”

When Faith switched to a new insurance provider, she tried again to see if she could have a prosthesis fit by Arm Dynamics. “So, I went last year. I went back and I met with Julian and the team, and I was just, again, blown away. They're just so nice and supportive and my insurance was a lot better this time. We were able to move forward.”

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Faith was fit with an activity-specific arm and a TASKA CX hand. “I call my activity-specific arm my gym arm, and it has been honestly the best. I use it at the gym like for my barre class, for Pilates, just anything I need for stability. I can also attach a dumbbell to the end of it, so I can do a lot of different exercises to really work that side of my body and make sure it's even, because before that my shoulders were actually uneven – I just didn't have as much muscle on that side. Actually, going to the gym at all was new for me – there were just too many things there where I was like, ‘How would I do that?’ Without my gym arm, I would not have joined a barre class, I would not be doing Pilates. I couldn’t bench press.”

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She has also found that having an activity-specific arm and a better fit with her myoelectric hand has helped with the pain she had been experiencing. “I have less pain. I used to get pretty bad neck pain just from using one side and just not having the muscle stability and everything. So that’s been a huge change.”

Switching from her bebionic to her TASKA CX has been great too. “I really did like my bebionic – it did help me a lot. But the TASKA hand – it’s phenomenal. It’s the best hand I’ve ever used. While all these hands are crazy sophisticated, this TASKA is even more so, with the different grip patterns based on my myo triggers. I love that if something isn’t working for me anymore, I can just switch it – and I can do that myself, I don’t have to go into the center and have them help me switch the settings.

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“When I wear my myoelectric arm, it changes how people approach me. There’s no weirdness or, like, an elephant in the room anymore – people are just curious, it becomes a talking point. Kids, who are always going to say what’s on their mind, they think it’s so cool. I’ve been in the grocery store multiple times and had kids be like ‘Mom! She has a robot arm!’ Instead of awkward questions from people, it’s now this cool experience and it definitely boosts my confidence. Same for my gym arm, people always tell me how awesome it is and that I can switch so quickly from one device, like the Black Iron Trainer, to another, like the Dragon. When I’m out in public not wearing a prosthesis, people seem to feel bad for me, but that never happens when I’m wearing one. I should be able to wear what I want without any comments, but it is what it is. There are so many pros to having my prostheses, but I would say my biggest pro is just the confidence and the social boost that it gives me.”

Her advice to others starting on their prosthetic journey relates to that. “A big piece of advice I have is to not feel guilty about when you don’t wear it. Yes, it took a lot of work to get it and yes it’s an amazing thing and yes there’s a certain amount of privilege in having it, and I do struggle with this guilt, too. For people with a congenital difference, going your whole life having one hand and then all of a sudden you have two, it's a huge change. Give yourself grace and know that it’s okay not to wear it all day, especially at the beginning when you’re adjusting to it.”

Speaking with Faith was so helpful in learning more about her perspective and the perspectives of people with congenital limb differences. When we hear about people’s experiences, it helps our team learn how to serve other patients better. We want to know how best to fit our patients with prostheses that work for them. “Both my gym arm and my TASKA have opened up a lot of doors, which is awesome.”

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If you or someone you know would like to learn more about the holistic prosthetic care we offer, which includes not only being fit with a comfortable, functional, attractive device, but also being taught how to use it by our on-site clinical therapy specialists, please contact us. If you’d like to leave a comment for us, or for us to pass along to Faith, please do so below.

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