Own Your Health the Enuval Way

At Enuval, the mission to address scoliosis goes beyond traditional approaches; it's about empowering individuals like me who live with this condition. Scoliosis often remains under-discussed, leaving many to face its challenges alone. Not today. Read along to discover my story and learn more about Enuval and what we can all do together to change spine health for the better.

Today I bring to you something near and dear to my heart, the struggle of scoliosis and the way this diagnosis changed my life. I am partnering with Martha Hunt and Sariah Khormaee MD, PhD along with many other extraordinary women to shed light on spine health and ways we can navigate this condition together.

Enuval's mission to address scoliosis goes beyond traditional approaches; it's about empowering individuals like me who live with this condition. Scoliosis often remains under-discussed, leaving many to face its challenges alone. Enuval is actively working to change that by shining a light on the unique experiences of those affected.

Through innovative projects, such as studying the intersection of scoliosis and pregnancy and improving access to quality spine implants, they are dedicated to finding practical solutions. Their focus on patient-led research ensures that our voices are heard and valued, fostering a sense of community and support. Together, we can raise awareness and advocate for better care and understanding of scoliosis. I am so honored to share my story with all of you today and highlight Enuval’s efforts in this ongoing research. 

My Story:

My story began when I entered the 8th grade at just 13. That year, my parents noticed my seating positions were uncommon, my posture starting to decline in ways that felt unsettling. I could sense something was wrong with my spine, but I was too young to fully understand or to advocate for myself.

Then came the diagnosis: scoliosis, kyphosis, a fractured L4 and L5, and spondylolisthesis. I find myself among a rare group, severe spinal issues, but not severe enough for surgery. It’s a frustrating reality that often goes unspoken. This diagnosis has been life-altering, shaping my identity in ways I never expected. I’ve often felt a mix of emotions about my condition, including a sense of isolation and hating the way it looks. But I want to emphasize that your spine does not define you. No “deformity” can dictate who you are on the inside, nor does it diminish your beauty on the outside. Growing up, the pressure to conform to certain ideals especially during puberty, with a scoliosis diagnosis was overwhelming. Even now, I grapple with my appearance; I have a noticeable hunch in my back that I often try to hide. Yet, I’m learning to accept it more each day, understanding that my worth is not determined by my physical form. Every step towards acceptance is a step towards embracing my true self. If I can help one, just one other person not feel alone in this, then I did my job. I don’t talk about this condition enough but it was the cards I was dealt and it is time I open up about it and share it with the world.

At the end of 2023, I discovered yoga, and it has become a vital lifeline for managing my daily pain and the negative thoughts associated with my scoliosis and kyphosis. If you or someone you know struggles with back pain or spinal conditions, and finds themselves in the unique position of being unable to pursue surgery, I encourage you to give yoga a try. If it doesn’t resonate with you, there are other options like acupuncture or therapeutic massages. However, I truly urge you to experience yoga; it has been transformative for me, both physically and mentally.

I am honored to be a leading perspective for Enuval. At first, it was tough; learning to accept my condition was a journey in itself. But now, I feel stronger and more confident. I want to share my story for others who are facing similar challenges. Together, we can shine a light on scoliosis and spinal conditions, tackling these medical hurdles head-on both in the states and internationally.

Enuval’s Mission:

I applied to be a part of Enuval back in 2021. The women in this amazing group have taught me so much and I am so fortunate to have been a part of their research and team efforts. Martha and Sariah have put in countless hours and time to make this mission come to life and I am so happy Enuval’s research is now published. You can check out their website HERE which I highly encourage you to!

Enuval envisions a future where spine care is transformed through patient-generated solutions that promote innovative, effective, and accessible treatments for everyone. They are dedicated to engaging the public at every stage, inspiring individuals to take an active role in their health. Particularly focused on empowering young women affected by scoliosis, Enuval encourages them to become both clinicians and researchers in the field of spine health. Through their training programs, they ensure that the voices of those with lived experiences are heard and valued, making a real impact on advancements in care.

In their commitment to sustainable solutions, Enuval supports research that makes sophisticated technologies accessible and affordable, ultimately enhancing diagnosis, prevention, and treatment of spinal disorders. Their work includes evaluating the safety, quality, and cost of implants worldwide, ensuring that patients and surgeons have access to unbiased information. By promoting open access to high-quality resources about spine health, Enuval empowers both patients and healthcare providers to make informed decisions. Through collaboration with investigators in low-resource regions, they build meaningful partnerships that bring diverse perspectives to the table, driving improvements in spine care for all.

I want to express my heartfelt gratitude to Martha Hunt, who has been instrumental in my journey toward accepting my scoliosis and kyphosis diagnosis. I vividly remember a couple of years ago when I walked in NYFW and saw photos of myself that highlighted my back, exposing my condition for all to see. I was devastated and spent days crying over those images. Feeling incredibly alone, I reached out to Martha for a quick call, as none of my friends could truly understand what I was going through. She generously took over an hour to talk with me, reassuring me that I am so much more than those unflattering photos and that I am not alone in this journey. My younger self is deeply grateful to her, and now, as an adult, I aspire to offer the same support to someone else. Thank you, Martha, and thank you, Sariah, for your dedication to this research and for illuminating the importance of spine health. You are truly the backbone of this transformative work, literally! ;)