We’ve all experienced that dreaded injury that puts our workouts and, sometimes, our lives on hold. Whether it’s a sprain, broken bone, or surgery it can be so frustrating to suddenly not be able to do the things you used to do. Now, imagine being told that injury you experienced will be permanent. To say you feel defeated is an understatement. Many people face this news every day after a serious injury or, in my case, when a serious birth defect causes issues in adulthood. How do we accept this? Or do we find a way to beat the odds? I have chosen to find a way to beat the odds and am fundraising my way to a brighter, active, and hopefully pain-free future…
the IDEO device and my foot (xray and photo) today.
My name is Lisa Kramer and I was born in 1986 with a severe unilateral clubfoot (talipes equinovarus for you medically-advanced readers out there) on my right foot. Although it is the most common foot deformity that a baby can be born with (1 in 1000 births), it is not well known outside of the clubfoot community and a specialist is required for proper treatment. In summary: the foot is born with shortened tendons that cause it to turn down and inwards. Although there is no “cure” for clubfoot, there are treatment options including the Ponseti Method’s boots and bars (non-surgical) and surgical methods. When I was born my parents and family were given the prognosis that “she will never walk”. Lucky for me, I have a stubborn Hungarian mother who sought out a second opinion.
My treatment started with casts and boots… and it failed. While most clubfeet can be “corrected” using this method, mine was too severe and did not respond. At just 8 months old I had reconstructive surgery. Although I’m not 100% sure the medical terminology of what was done, I do know this: tendons were released, reconfigured, and some were moved from my leg to my toes. My subtalar joint (just below the ankle) was also fused to keep my foot straight. Now that my foot was facing in the right direction, I forever lost the ability to point my foot or wiggle my toes. Unlike many doctors who treat clubfoot, mine did not focus on the foot’s appearance. He was concerned with the functionality of my foot and I truly believe that because of his approach I was able to have a fantastic and active childhood and stuff it in the face of the doctor who said I’d never walk!
I grew up playing every sport I could possibly try. I was always the girl trying to out-play everybody and was even a competitive dancer thanks to an instructor who gave me the chance to compete without judges docking points for my un-pointed foot (think Dance Moms, but without all the crazy). I was most successful in Softball, an all-conference Fastpitch player in high school and even considered playing in College (but chose a way-too-time-consuming major instead). I could fool anyone into thinking there was nothing different about me… as long as I had shoes on. My right foot and leg had developed noticeably smaller than my left side. At 14 years old I had to have surgery on my left knee to stunt the growth plates and allow my right leg to try and “catch up”. Before the surgery I had a 2+ inch difference in leg lengths and now only have a 1 inch difference causing much less strain on my lower back. I could stand longer and even run better now that my back/posture was improved. Although I was never a long distance runner, or the fastest runner, I grew to love it. I started running 1-3 miles a few days a week and ran my first 5K in college.
It was only within the last 5 years that my birth defect started causing me pain. It was not a shock to me. Growing up my doctor was brutally honest about the troubles I may face as I got older: arthritis, pain, more surgeries, etc. In my 20s I first started to experience pain when on my feet for several hours at work. As I got older, I could spend less and less time on my feet before facing unbearable pain. I haven't gone for a run in over 2 years. My current diagnosis: “only run if you are about to get hit by a car”. Great… maybe a car can chase me for 1 mile so I can get that wind in my face again and the adrenaline will mask the pain? Not likely. More and more frequently, I have to cut activities out of my life that I love because the pain is too much.
Now the pain persists even when I'm not active. Some mornings require a foot massage before even attempting to step on the ground, and other mornings I’m hopping around on my good leg and not even bothering to step on the clubfoot. The realization that I needed to find a solution came when I had to consider giving up the sport I love most: softball. I’ve been playing in women’s and co-ed leagues since college. I currently have somebody run for me after I slowly make it to first base, but fear that I won't be able to participate at all soon.
I struggled to find a doctor in my adult years that could understand my condition, my love for an active lifestyle, and my stubbornness to not accept the "just don't run or walk for exercise" response that I kept getting. I finally met with Dr. Stephen Benirschke in Seattle, WA who not only knew my childhood doctor, but he and his colleague went above and beyond to help me find a solution to reach my long-term goal to run again. My immediate goal was to reduce my pain. I got a custom insole, did some physical therapy and tried stretching techniques, but it just wasn't enough. Finally, at one of my check-ups he and his colleague told me about a revolutionary device that until about 2 weeks earlier had only been available to military personnel. It was called "IDEO" and stood for "Intrepid Dynamic Exoskeletal Orthosis". I watched a brief video about the device and knew this was it: I was about to get my life back (insert tears of joy here).
The Intrepid Dynamic Exoskeletal Orthosis (IDEO) was created by prosthetist Ryan Blanck in an effort to help injured military personnel avoid amputation after leg trauma. It is a cross between a prosthetic and an orthotic that, in summary, stores energy to deflect injury and minimize pain allowing users to walk, run, jump, etc. The results are mind-blowing. People that can hardly put pressure on their leg are running full speed with this device on. The IDEO was only recently made available to civilians through the Hanger Clinic. I met with Ryan in the Fall of 2013 after he moved back to the Tacoma area and, after a consultation and recommendation from my doctor, qualified as a candidate for the device. Unfortunately, my insurance at the time denied any coverage. The custom-made carbon fiber device costs approximately $9,000 out of pocket. This includes leg casting, prototype testing, device cost, and device use training. I appealed their decision. I argued that if the decision was made to amputate my leg (a difficult choice that some adults with severe clubfoot pain make after multiple surgeries and years of suffering) they would cover my surgery and prosthetic devices, so why can’t they cover something that will prevent this? Still no luck. Clubfoot is not seen as a “disability” since research does not go far beyond childhood treatment for some reason despite many adults facing issues related to their birth defect.
After much consideration for such a large expense, I decided to begin my efforts to pay for the IDEO out of pocket. There is no price tag on quality of life and like I said, I’m choosing to beat the odds. As of today (4/21/14), after 6 weeks of fundraising, I have raised $2,510 and am at 27.8% of my goal! The amount of generosity has been incredible and I may or may not cry every time I get a donation notification (clearly, I cry…). I can’t wait to go for that first run, even though it will probably only be a few steps as I adjust to the device. I am so grateful for the support I have received (both emotional and financial). I have been inspired by other stories of incredible individuals overcoming their obstacles in life. Maybe I can inspire someone facing physical limitations to not take “no” for an answer: you never know what medical advances are out there unless you are that annoying patient that refuses to give up and constantly seeks a solution!
Living the good, fit life in Seattle, WA. Stay tuned for more bilingual fitness tips and nutritious recipes.