My name is Savannah. I’m a singer, dancer, actress, sports fan, and college student—but I’m also a young adult living with chronic illness.
From the very beginning, my life was a mix of love, curiosity, and pain. As a newborn and toddler, I cried constantly—not in the typical colicky way, but in a way that signaled real, persistent pain. My mom had an instinct that something wasn’t right. She took me to countless doctors, only to be dismissed and even told that I was just “jealous” of my younger sister. Undeterred, she continued advocating for me. The moment I formed my first full sentence—“My back hurts”—it was both heartbreaking and a confirmation: I had been suffering silently all along.
Despite the mysterious pain, I had a joyful childhood. I discovered dance at age three and immediately fell in love with it. School was a safe haven where I thrived academically, though I was naturally quiet and preferred reading books or practicing routines in dance class. My life felt relatively “normal,” aside from unexplained pain, incontinence, and other mysterious symptoms that no one could explain.
For years, my symptoms puzzled doctors. Finally, after persistent searching, I was diagnosed with Tethered Cord Syndrome and Ehlers-Danlos Syndrome—the missing pieces of a confusing seven-year puzzle. Suddenly, all of the strange pain, symptoms, and challenges made sense. My family and doctors finally had answers.
I underwent major spinal surgery to release my tethered cord. The recovery was intense—I had to relearn how to walk—but soon, I returned to dance, doing what I loved most. My back pain vanished, and I could embrace a “normal” life, with only occasional joint pain, doctor visits, and physical therapy sessions as reminders of my condition.
This new chapter lasted until early middle school. I continued dancing, singing, acting, and even attended a performing arts school, surrounded by teachers and peers who understood my medical challenges. But new obstacles arose: chronic kidney infections. The nerve damage from my tethered spinal cord had already caused UTIs and incontinence, but now these infections were severe, causing extreme fatigue, nausea, kidney and bladder pain, and a constant reliance on antibiotics.
For nearly eight years, I traveled across the country searching for answers. I tried countless medications, endured seven PICC lines, repeated IV antibiotic treatments, suffered hair loss, visited numerous specialists, and underwent multiple major surgeries. Despite these efforts, the infections persisted.
Over time, these chronic kidney infections touched almost every part of my life. Freshman year of high school brought a partial nephrectomy in hopes of resolving the issue—but relief was temporary. Doctors performed countless tests, sometimes inventing new procedures just to pinpoint the cause. I spent hours drinking fluids for scans, seeking clarity that often remained out of reach.
Today, my care focuses on treating infections as they arise while maintaining as much health and normalcy as possible in between. My medical team believes a tiny connection between my colon and kidneys, likely linked to Ehlers-Danlos Syndrome, allows bacteria to travel and trigger infections. Despite three major surgeries attempting to correct this connection, the infections have returned. Finding the source feels like searching for a needle in a haystack.
Perhaps the hardest part has been not just the pain, but the skepticism I’ve faced. Many celebrated physicians and hospitals have questioned me and my family, sometimes implying we caused my illness. Traveling with hope only to be dismissed has been exhausting and heartbreaking. Yet, these experiences also taught me resilience and the importance of self-advocacy.
For a long time, I asked daily, “Why me?” I felt anger and frustration at the world. Now, I channel that energy into pursuing my dreams—becoming a Broadway performer—and advocating for others through my nonprofit organization. I speak to students, patients, families, and medical professionals about life with chronic illness, using my story as a tool to inspire, educate, and motivate.
Life with chronic illness is filled with ups and downs, but I am endlessly grateful for my incredible family and support system. I have embraced my chronic illness and let it fuel my advocacy and creativity. While navigating college and pursuing Broadway, I’ve become stronger, braver, and wiser than I ever imagined.
I am profoundly thankful for the caring nurses and dedicated physicians who have kept me alive and empowered me to pursue my dreams. My dream team—Dr. Katrina Hood and Dr. Sean McTiegue—stands as my unwavering advocates, and I owe so much to their dedication.
Follow along on my journey as a performer who also happens to live with chronic illness. My story is a testament to persistence, hope, and the courage to keep moving forward—even when the path is full of obstacles.
