Recognize Craniocervical Instability (CCI) Related to Ligament Laxity and Support Earlier Patient Recognition

 

To: National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC)

From: Patients, families, clinicians, and advocates seeking national awareness for an overlooked condition

“You have a broken neck.”

That sentence finally explained four years of declining health that no one could name.

It wasn’t a fracture. It was ligament failure causing CCI. And it went unrecognized because CCI related to ligament laxity is not something most clinicians are taught to see.

My story is not an outlier.

It is simply invisible until someone knows how to look for it.

WHY THIS MATTERS

CCI can quietly take a person’s life apart.

Before diagnosis, I lost the ability to work, exercise, drive, or even hold my head upright. My head felt heavy and unstable, and lying down was sometimes the only relief. Many patients face the same limitations long before anyone recognizes what’s happening.

When CCI is recognized earlier, patients and clinicians often have more opportunity to explore conservative approaches before symptoms progress to a point where surgical intervention becomes a last resort.

Our daughter is now being monitored for connective-tissue concerns. Awareness matters for every family, so children everywhere don’t repeat the same painful path.

Awareness is the first step toward recognition.

THE PROBLEM

Patients with CCI are moving through a system that isn’t equipped to recognize their condition:

• They experience delayed or incorrect diagnoses
• Routine imaging often appears “normal” because it isn’t designed to show ligament instability
• Without early recognition, symptoms can escalate and quality of life can decline
• Access to knowledgeable clinicians is limited, often requiring long-distance travel and significant personal cost
• Online communities with tens of thousands of members show how many people are searching for clarity

This isn’t unusual. It is simply unseen.

And patients shouldn’t have to collapse before being seen.

WHAT WE’RE ASKING FOR

We are calling on the NIH and CDC, along with national medical-education organizations, to form a multidisciplinary task force to examine CCI and identify where early recognition is breaking down.

A task force can:

• Recognize CCI as an underdiagnosed condition that significantly impacts function and quality of life
• Develop national awareness and educational initiatives
• Integrate foundational CCI awareness into medical education and training
• Identify barriers that prevent timely evaluation
• Recommend priorities for research and early-recognition pathways

This work spans several areas of NIH expertise, including neurology, connective-tissue disorders, rare-disease research, and women’s health.

CCI affects patients across the U.S. and around the world. Strengthening awareness here can help families everywhere.

We are not defining diagnosis or treatment.

We are asking for a formal mechanism to understand and address a condition that thousands of families struggle to navigate alone.

A task force is a necessary first step toward addressing this long-standing gap.

TO CLINICIANS, RESEARCHERS, AND SPECIALISTS

Many of us reached you only after years of uncertainty.

This petition is about helping more patients find you sooner and ensuring clinicians everywhere have the information they need to recognize potential instability earlier in the care journey.

Thank you for the work you already do.

We invite you to stand with us.

CALL TO ACTION

Help bring national attention to this overlooked condition.

No one should need a fusion just to be seen.

Please sign now.