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