The story of Prateek
My name is Prateek Kumar Shukla. I am a second year medical student at Kent State University – College of Podiatric Medicine. My journey towards becoming a foot and ankle surgeon is one shaped by my collective interactions with numerous physicians.
I am the eldest child of Vasant and Amita Shukla. When my mother was pregnant with me, she had no reason to think question my health and development. There weren’t any signs that would indicate my numerous congenital abnormalities. Within the first 24 hours of my birth, the doctors noticed an anorectal malformation, usually associated with vertebral anomalies, and made an immediate decision to perform a colostomy. And so, begins my story.
Growing up, in elementary school, I was much smaller than the other kids and often bullied because of my height. My pediatrician, at the time, gave up monitoring my growth because I never appeared on the national average height/weight chart. It wasn’t until sixth grade that I finally understood what made me so different, so…uncommon.
One by one, the school nurse called students into her office for a physical check-up. When my name was finally called, I felt time slow down to a halt, each second feeling like an eternity. Nurse Williams had asked me to touch my toes, and then proceeded to trace her fingers down my spine. She paused. She then repeated this movement several times, running her fingers up and down. I became the first and only student in school to have been diagnosed with scoliosis.
At the tender age of 12, I began going to Scottish Rite Hospital in Dallas, Texas to visit a team of pediatric spine specialists. After undergoing several x-rays, I was placed in a room where I was greeted by a team of medical doctors. They presented my x-ray: congenital scoliosis measuring 50 degrees in my thoracic spine (T6-T12), with spinal rotation and multiple fusions. I was immediately overwhelmed with questions and was requested to bend in all kinds of peculiar ways. The consensus was unanimous: my case was considered severe and I would eventually require surgery. They began to explain that they would need to insert large titanium rods and screws to straighten my spine. Due to the multiple fusions in my spine, a back brace was not an option. I went home fearing my future.
On one hand, this surgery had the potential to make me taller and I could finally fit in with all the other kids. I wouldn’t have to worry about being bullied or picked on anymore. This would be my chance to feel normal. On the other hand, would I have the ability to walk without being in pain? Would I have the ability to play and bond with the other kids during recess or P.E.? These thoughts would not escape my mind.
I continued routine visits to Scottish Rite throughout my middle school and high school years. I tried to live my life as normally as I could, while always trying to be mindful of my condition. I was relatively active in sports like soccer, but noticed I had little to no cardiovascular endurance. I thought I was simply a poor athlete. It wasn’t until much later in life did I realize my ribcage formed obliquely and constricted my lungs from expanding. My normal lung function continues to hover around 80%. I refused to quit sports and asked the doctors what else I could do to stay active. They recommended low impact sports to strengthen my back and leg muscles. This then led me to swimming and tennis.
During my junior year of high school, surgery was brought up again, but this time it was a palpable reality. I began mentally preparing myself for the surgery that was scheduled for the upcoming summer. The morning of the surgery, my father received a phone call from the surgeons. It was cancelled. The team of doctors had decided that I would require extensive spinal reconstruction that would likely cause more pain than the scoliosis itself. I was relieved I evaded the surgery, yet confused. What did this mean now? What was I supposed to do about my scoliosis?
During my senior year of high school, I quit playing tennis to focus on academics. I was a highly motivated and ambitious student with dreams of being a physician myself. But because I was no longer active in sports, I had gained a tremendous amount of weight in a short time. I found myself being bullied yet again, but this time by those I considered my friends. I was desperate for change and found myself in the gym. I had no goals other than to lose the weight, and strengthen my muscles to prevent future back pain. I went on YouTube and found two specific channels, run by Omar Isuf and Jonnie Candito, who taught me all the basics of lifting weights and the general principles of strength training. This set me on my powerlifting journey that continues to evolve today.
In 2013, I had aggravating shoulder pain and went to see an orthopedic physician. The doctor took x-rays of my shoulders, back, head, and neck. When he returned to the room, he told me that his colleague Dr. Burg would like to speak to me. Dr. Burg had listened wholeheartedly and diligently, as I reported common complaintsof shoulder pain. He was dictating his findings on my x-rays when suddenly, he paused. His facial expressions morphed into one of concern.I rationalized that he discovered my severe scoliosis and wanted to discuss this finding. However, Dr. Burg began asking extensive seemingly-unrelated questions. A nervous atmosphere began to pollute the room. In a serious, yet subtle tone, Dr. Burg stated I had a rare disease called Klippel-Feil syndrome (KFS). KFS is a degenerative skeletal abnormality characterized by the fusions of two or more cervical vertebrae and is accompanied via a myriad of other complications. Dr. Burg began to explain how I was affected: C4-C5 degenerative and mobile, C5-C6 was fused, C6-C7 had mild foraminal stenosis, and C7 was fused to T1 & T2. Dr. Burg told me something I had already heard once before: that any attempts to correct my KFS would likely lead to further pain. At the present moment, there was nothing more he could do for me. If the symptoms worsened, we could revisit surgical options.
With this new diagnosis, everything started to make a little more sense. All the minor headaches & constantly sore neck were all due to my own anatomy. I stopped to take a deep breath and I let it out slowly. I could feel my eyebrows pressed together, and my teeth were so tightly clamped that the muscles in my jaw jumped. I took another deep breath and reminded myself that it wasn’t my family I was mad at or even the doctor; it wasn’t their fault. The days following were all the same, except that as each one passed, I grew slightly more frustrated. I wanted answers. I wanted to be normal. I scoured the internet for treatment options but couldn’t come up with any viable solution due to the rarity of the disease and subsequent lack of research. Instead, I discovered all the possible complications that I may have to face: spinal stenosis (narrowing of spinal canal) in the neck which could compress and damage my spinal cord; nerve damage in the head, neck, or back; development of osteoarthritis around the fused areas in the neck, or even cervical dystonia. But that day, I made a decision. I made several lifestyle changes to help reduce my neck and back pain. I was hyper aware of my posture at all times, changed my study styles from notes on a desk to placing them on a bookstand. I became determined to beat this debilitating disease.
Summer of 2013, I enrolled at The University of Texas at Dallas to complete a second Bachelors in Neuroscience. It was here that I met Dr. Van Miller, a mostly-retired pediatric neurologist. My first class with him was medical neuroscience. We finished the course early and he gave us the option to have an additional lecture on rare diseases. Guess which disease appeared in lecture? Yep, KFS. Dr. Van Miller quickly became my academic and life mentor. He encouraged me to seek out groups on social media and find others like me. I began sharing my powerlifting journey with him and sought his opinion. He gave me a very practical answer: “if it hasn’t been an issue yet, it’s likely a non-issue”.
Thus, in 2016 I began using my powerlifting Instagram account to become vocal about my KFS and scoliosis story. Since then, I’ve encountered numerous people afflicted with similar abnormalities and received an outpouring amount of support. I have been fortunate enough to be able to console a brave teenager experiencing what I had gone through, along with a handful of worried mothers—some within the United States, some located internationally. My ability to lift weights and my journey through medical school has given them hope.
Spending time in various clinical settings has shown me the vital role healthcare practitioners play during times of need and patient suffering. My collective experiences have allowed me to live a happy and manageable life. I am extremely fortunate to be able to continue powerlifting and be active in sports. It is difficult for people to understand how much effort is involved in working with all my conditions, but I am constantly reminded I live a blessed life. I can proudly say I am succeeding in medical school and can see my future as a foot and ankle surgeon unfold. Although I can’t predict the changes that lie ahead of me, there is one thing that I am certain of: I will always have faith & choose to move forward. I have become an extremely strong individual with an endless amount of compassion for humanity. I hope my story will inspire others to never lose hope and pursue their own path to greatness.