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

My Jaw Is Collapsing—and I’m Fighting to Save My Voice

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