By: Denise Hoffmann, RN
Certified Peer Visitor | Lead Advocate | Scientific and Medical Advisory Committee, Member
Awareness doesn’t only come from statistics, ribbons, or t-shirts. It comes from stories that connect us. And when a story connects us, it gets passed along, weaving more folks together and ensuring we feel part of a supportive community.
In honor of Limb Loss and Limb Difference Awareness Month (LLAM), the Amputee Coalition asked me to share my story with you. Too often, we see only the big, big triumphs in our community – the marathon completed. The mountain scaled.
When, really, it is the personal moments that matter. And the challenges you and I face that unite us all.
At 12 years old, I was diagnosed with bone cancer in my left knee, that spread to a few spots in my femur. The doctors had to remove my femur, knee, and supporting muscles and ligaments. They inserted a donor femur with a metal rod that supported my leg but fused my knee joint.
During my senior year in high school, my bone and metal rod broke, needing multiple surgeries to repair it. I was faced with the decision between a future of continued salvage surgeries, or just one more surgery – an amputation.
It was in the spring of my freshman year of college that I became a left leg above-the-knee amputee. The first couple of years were the hardest. Getting a good socket fit is difficult, requiring frequent appointments with your prosthetist, because your limb goes through so many changes in shape.
One of the most important things I tell new amputees is – DON’T GIVE UP! Your limb is changing so much during the first year. Stick with it and work together with your prosthetist to make the changes you need to find the right fit. During this time, it is very important to connect with others in the community who are on a similar journey as you. This journey is full of adaptations and challenges for us all.
I made it through those first couple of years while pursuing my dreams and continuing my college studies. Today, I am a registered nurse with more than 24 years of experience in many different roles. I have come full circle, working in a unit at the pediatric hospital where doctors and nurses saved my life from bone cancer, to now using my experiences as an advocate for members of the limb loss and limb difference community.
It wasn’t until about seven years ago, well into my limb loss journey, when I first became a patient model with a prosthetic manufacturer and also began my journey with the Amputee Coalition. I realized there are so many great resources for our community. We just need to make people aware of them.
This is why I am telling you my story. I want every person of the limb loss community to know about the amazing resources of the Amputee Coalition and the National Limb Loss Resource Center. They have an amazing network of Amputee Coalition’s Certified Peer Visitors and Support Groups, as well as print resources and guides to help you navigate your new journey. Your gift of $35 can help the Amputee Coalition reach more people during 2021 – their 35th Anniversary year.
I also want to hear from you about the everyday moments in your life where you felt good, or strong, or in pain, or feared the unknown. The moments that mattered to you, might inspire someone else to not give up. You can share your moments that matter via this form or share your story on social media – use the hashtag #LLAM and tag the Amputee Coalition.