Why I Created This Community
Living with Scoliosis: My Journey
Living with scoliosis has essentially shaped my life, excuse the pun! Just shy of my 14th birthday, I had my first spinal fusion surgery, fusing T2 to L1. For decades, I managed my condition through a mix of treatments, adaptations, and sheer perseverance. But as the years went by, pain and a reduced quality of life became impossible to ignore. On the 37th anniversary of my first surgery, almost to the day, I underwent a second fusion from T10 to my pelvis. Now, with my spine fused from T2 to my pelvis, my mission has never been clearer—to support and empower adults navigating life with scoliosis.
The Gap in Scoliosis Education
My journey has led me to realize something frustrating: information for adults with scoliosis is practically nonexistent.
Most of the research, support groups, and treatment discussions revolve around children and teens. But what happens after that? What about the adults struggling with pain decades after their initial diagnosis? What about those who never had treatment as children, but are now experiencing worsening symptoms? What about post-fusion patients living with the realities of a fused spine?
I found myself searching for answers—digging through medical studies, reading personal stories, and trying to fill the gap between what little information I received from doctors and what I was experiencing. The disconnect between medical professionals and those of us living with scoliosis was undeniable. And I knew I wasn’t the only one feeling this way.
Creating a Trusted Resource
That’s why I launched this website—to create a space where adults with scoliosis can find the information, stories, and support they need. My goal is to build a strong community of adults who not only seek knowledge, but also feel empowered in their journey. Too often, there is a disconnect between what doctors know and what those of us living with scoliosis experience every day. I want to bridge that gap by providing education, real-world perspectives, and a place where medical expertise meets the lived experiences of those navigating scoliosis firsthand.
Here’s what you can expect from this website:
A Podcast: Featuring medical professionals, scoliosis advocates, and real-life stories to provide education and support.
Expert Insights: Interviews with spine surgeons, physical therapists, pain specialists, and more to break down treatment options and advancements.
Community & Connection: A place where people can share experiences, ask questions, and find comfort in knowing they’re not alone.
Resources for Every Stage: Whether you’re newly diagnosed, decades post-fusion, or somewhere in between, you’ll find information tailored to your needs.
You Are Not Alone
For too long, adults with scoliosis have been left to navigate this condition on their own. But we don’t have to do it alone anymore. My hope is that this website and podcast will not only provide education, but also foster a sense of connection and empowerment.
I invite you to explore the website, listen to the podcast, and share your story. Have questions or ideas for podcast topics? I’d love to hear them! Your input helps shape the conversations that matter most to our community.
Standing with you as we rise above the curve,
~Becky
