Eye Opener Press
Featured Author - Brenda E Smith
Stiff, But Not Broken
A Rare Disease, A Daring Experiment, and One Woman's Fight to Walk Again
by Brenda E. Smith
Available Soon
Hardcover Paperback EBook
$24.99 $19.99 $9.99
In this powerful medical memoir, Brenda Smith shares her extraordinary journey from fearless world traveler to patient battling one of the rarest autoimmune diseases in the world—Stiff Person Syndrome (SPS).
Once a globetrotting adventurer who braved remote jungles and ventured deep into high-altitude caves, Brenda never anticipated her body's inexplicable betrayal. As SPS took hold, her muscles became so tight that she could no longer walk. Her world shrank from boundless landscapes to the confines of her home.
Until an unprecedented opportunity came her way—to join an experimental medical trial using CAR T-cell therapy—the first of its kind designed to restore mobility for SPS patients. Her story reveals an unflinching account of risk when there were no guarantees, being one of the first to undertake this revolutionary approach. Through chemotherapy, cytokine storms, and moments of genuine fear, Brenda bravely stepped into the unknown.
This inspirational story of resilience proves that even when the body falters, the human spirit does not.
Praise for this book
"Stiff but Not Broken is more than a personal narrative—it is a powerful window into the lived experience of stiff person syndrome, told with honesty, courage, and remarkable clarity by Brenda Smith. As the lead investigator on the pivotal phase 2 CAR T-cell therapy trial using Miv-cel in SPS (KSYA8), I was deeply moved by Brenda’s story. It offered a perspective that no clinical measure or endpoint can fully capture: the daily realities of disability, the resilience required to endure it, and the profound hope that accompanies the search for better treatments.
Brenda’s story reflects the determination I see in so many patients with SPS—individuals who continue to push boundaries, not only for themselves but for the broader community. Her journey is also a testament to the essential role of caregivers like Monica, whose support is often the quiet force enabling progress and healing.
It has been an honor to be part of this chapter in Brenda’s life. This book is a meaningful contribution to both patients and clinicians, reminding us that behind every trial is a human story—and that those stories should guide the future of our work."
Amanda L Piquet, MD, FAAN
Professor, Department of Neurology
Céline Dion Foundation Endowed Chair and Director of the Autoimmune Neurology Program
University of Colorado Anschutz
"Stiff But Not Broken" is Brenda Smith’s remarkable journey through a harrowing diagnosis of Stiff Person Syndrome, a rare and mystifying disease. Through authentic and clear-eyed storytelling, this deeply personal memoir chronicles the progressive impact of Smith’s condition and her resilient pursuit of recovery. Beyond her individual experience, the book offers an intricate, insider look at a groundbreaking medical trial that now offers hope to shape the lives of many others navigating this disease. A powerful tool for patient advocacy, Smith’s story is a roadmap for overcoming the systemic hurdles of an elusive diagnosis."
Melanie Brooks, author of A Hard Silence and Writing Hard Stories
Dr. Piquet had been warning me since the start of the trial that I would likely experience a cytokine storm response to the new T cells doing their job, searching out and killing off the rogue B cells that produced the GAD65 antibodies. “The high fever is to be expected,” she reassured me, her voice calm and confident. “The team and I will guide you through it.”
