During her senior year of high school, Sydney struggled with progressive spondylolisthesis in addition, to being diagnosed with Ehlers-Danlos syndrome –
During her senior year of high school, Sydney struggled with progressive spondylolisthesis in addition, to being diagnosed with Ehlers-Danlos syndrome (EDS) and many of its comorbidities. EDS caused severe vertebral instability on top of the spondy, so getting a spinal fusion was extremely necessary for Sydney’s health. The surgery was mostly successful but caused a rare complication called Complex Regional Pain Syndrome (CRPS) in her left leg. According to the McGill Pain Index, CRPS is the most painful condition known to mankind. Sydney’s CRPS resulted in infections that would last for seven months at a time; EDS exacerbated these symptoms. Her symptoms progressed making anything that would touch her skin would feel as though it was burning. Because of the CRPS, Sydney’s leg died, and it continued to spread like wildfire. In late-August 2021, Sydney saw a surgeon that said her knee and everything below it was unsalvageable. Thirty-six hours later, Sydney lost her leg. The ‘Adventures of Stumpy Syd’ had begun!
When Sydney found out she was losing her leg, her surgeon connected her with Bulow OPS. Sydney met with the team, including Scott, her prosthetist, the day after her amputation and got fitted for a shrinker. Since her amputation, Sydney has successfully transitioned to life with a prosthetic leg. Apart from her above-knee amputation, Sydney had her skull bolted down to her c3 vertebrae, spinal cord detethered, lumbar fused, two sinus surgeries, a few emergency surgeries, tonsillectomy, and a shoulder plication. The reality with EDS is that you never know when you’ll need another operation. Sydney remains open-minded and tries not to use her conditions as a reason not to try something. “Since losing my leg, my goals have shifted out of survival mode and back to trying everything I possibly can, even if they are outside my comfort zone.”
Since the amputation, Sydney immediately wanted to do everything she had missed out on due to the years of being sick. “I’ve been given another chance at life and do not want to take it for granted.” Before getting sick, sports were a lifeline to Sydney, and they still are. During the time Sydney lost her leg she was following the Paralympic Games, even planning to host Paralympic watch party with her fiancé. They were still able to host their Paralympic party, however, it was just moved to the hospital. Seeing the athletes participate in the Games meant everything to Sydney even in her hospital bed, with hopes to someday have the opportunity to represent Team USA too. Since becoming an amputee, Sydney’s proudest accomplishment is competing in her first-ever gravel cycling race this August in Steamboat Spring, CO. She will be completing 37 miles at SBT GRVL, riding one-legged on a recumbent bike. She is also proudly joining an able-bodied water polo league.
In her free time, Sydney enjoys spending time with her two hound dogs, fiancé, family, and friends. She also takes pleasure in singing, dancing, listening to music, writing, reading, swimming, and exercising. Sydney is very passionate about spreading awareness about her conditions on social media with hopes to help destigmatize the realities of living with limb loss and chronic illness.
When it comes to advice for new amputees, Sydney says,
- “Listen to your physical therapists, doctors, prosthetists, & orthotists while also holding yourself accountable to do what you’re supposed to. No one is going to put in the work for you.”
- “Gym time is excellent, but if you’re anything like me, you’re more focused on putting in as many miles/reps as possible than perfecting your gait. My prosthetist, Scott, says an amputee’s walking technique is cemented into their muscle memory within the first few months of having a prosthetic limb. It will save you years of bodily pain if you learn correctly right off the bat.”
- “Once you have the proper technique, do thousands of steps with it. Your body will soon register this as a standard way to walk. Look for fun ways to practice moving around on your new limb in addition to PT & the parallel bars. If you are comfortable (& cleared for it), I highly recommend going to the gym or finding different ways to incorporate more movement into your life.”
- “Surround yourself with positive people who believe in you. I’ve been fortunate to have such a fantastic community envelop me with love.”
- “Get more active on social media. When I go out in public, 9x out of 10, I’m the only amputee. There are plenty of content creators just like us!”
- “Be open-minded to adapting. There are many limitations being an amputee can cause. However, when there’s a limit, there’s a way around it. You may have to get creative, but life hacks can be fun to figure out if your mind is open to finding new ways to do things.”
- “Please be kind to yourself. We are often our own worst critics. Sometimes feelings of defeat can overshadow our true progress. Please remember you are learning something that will alter how you live for the rest of your life. Of course, it’s not going to be a cakewalk! Mastering any task takes months, sometimes years, of ongoing work. So please, never give up. Speak kindly to yourself. Know you are enough, even when you feel otherwise.”