Stacey Schramm

What would you do if you woke up one day… and couldn’t speak clearly? Not because of anxiety. Not because of stress. But because your jaw—your ability to communicate—was physically breaking down. That’s where I am. My name is Stacey And I’m living with an extremely rare condition called Synovial Osteochondromatosis of the TMJ—a disease where my jaw joint produces cartilage that hardens into bone, filling the joint and destroying it from the inside. This isn’t “just TMJ.” This is: A rare craniofacial disorder Bone-on-bone joint destruction Structural damage to my jaw, face, and airway Impact on my airway, speech, sleep, and daily function Constant pain and pressure The reality most people don’t see Over 35 million Americans suffer from TMJ disorders—and the majority are women. Yet only an estimated 500–800 total TMJ joint replacement surgeries are performed in the U.S. each year. And cases like mine? So rare that only a limited number have ever been documented. Most surgeons will never see one. For years, I was dismissed I was told it was: stress clenching “just TMJ” But it wasn’t. By the time imaging finally revealed the truth… the damage was already severe. The part no one prepares you for This condition falls into a grey area in healthcare. It’s not fully dental. It’s not fully medical. So patients like me get stuck in between. That means: denied coverage limited insurance support and being left to figure it out alone I’ve had to become: my own researcher my own case manager my own advocate Searching across the country for surgeons who have even seen this condition. There is no system designed for patients like me—only a path you have to build yourself while living through it. What my life looks like now Three months after getting married, I was diagnosed. Instead of stepping into a new chapter, my husband and I are navigating: chronic pain uncertainty and overwhelming financial strain This condition affects: how I eat how I speak how I feel in my own body Some days, even forming words clearly takes effort. And when something starts to take away your ability to communicate… it changes more than your health. It changes your identity. Why I’m asking for help Here’s the reality most people don’t realize: TMJ joint replacement surgeries are often funded by patients themselves—because the system doesn’t provide the level of care we actually need. The treatment I need is highly specialized—and not fully covered by insurance. I am raising funds to: undergo critical surgical treatment cover out-of-pocket medical expenses restore function, stability, and quality of life Because without treatment, this condition will continue to progress. Leading to permanent disfigurement, loss of jaw function, airway complications, and skull-base damage. Why I’m sharing this publicly This isn’t just about me. It’s about how often women are: dismissed misdiagnosed told it’s “just stress” It’s about conditions that fall through the cracks of our healthcare system—and the patients who get left behind because of it. By the time many of us are finally taken seriously… it’s already advanced. That has to change. If you’re here, thank you Whether you donate, share, or simply take the time to read this—it means more than I can put into words. You’re helping bring visibility to something that too often goes unseen. With gratitude, Stacey