For two agonising decades, Ciera Buzzell lived with excruciating headaches and dislocating joints, her pleas for help repeatedly dismissed by doctors who attributed her suffering to stress and depression. It was not until 2022 that she received a life-altering diagnosis: Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder.
A Life of Pain and Dismissal
The 40-year-old former US Marine, from the suburbs of Washington DC, saw her health crumble shortly after enlisting in 2004. During basic training, her shoulder dislocated during an exercise. Later, her hip popped out while running, a pattern that spread to other joints. "It was this constant battle of trying to get better," she recalled.
Despite her deteriorating physical state, medical professionals consistently questioned her mental health. "Every single time the doctor would say, 'Are you depressed right now? Is your depression flaring up?'" Buzzell said. "They blamed it all on my mental status." This repeated dismissal led her to a dark place: "I felt like the lowest on earth because I started believing 'I guess I am crazy enough to make my body do these things.'"
The Devastating Diagnosis and Its Consequences
After leaving the Marine Corps in 2009 and being misdiagnosed with fibromyalgia, Buzzell's condition worsened dramatically. She experienced regular vision loss, needed a neck brace for stability, and required a jaw device to eat. In August 2022, genetic testing finally confirmed she had EDS.
The disorder, caused by inheriting a single mutated gene, affects collagen production, weakening skin, joints, blood vessels, and organs. For Buzzell, it triggered a secondary, severe neurological condition: Chiari malformation. Here, brain tissue descends into the spinal canal, blocking cerebrospinal fluid and causing debilitating headaches, neck pain, and vision issues. "It's ironic that doctors dismissed me as being 'all in my head' but ironically it is all in my head," she noted.
Fighting for a Future and Fearing Paralysis
The relentless progression of her illness forced Buzzell to abandon her career as an intensive care unit dietitian in 2023. Now a single mother, she is heartbroken by the days she cannot get out of bed to take her children to school. She lives in fear of rapidly progressing paralysis and has suffered permanent damage, including bladder issues.
Her only hope is a major surgery to fuse her skull to her spine using bone grafts and metal rods, a procedure that could prevent quadriplegia and loss of bowel control. Her brother has launched a GoFundMe to raise $70,000 for the operation. "As a mom with young kids it would be heartbreaking to completely lose my ability to move," Buzzell said. "I already feel like the inside of me has died and the only thing keeping me alive are those children."
