Bobby Jones Chiari & Syringomyelia Foundation

When most people think of Chiari malformation, they picture children navigating surgeries and doctor visits. But the truth is that many adults live with Chiari every single day—often after years of misdiagnosis, persistent pain, and invisible struggles that can stretch across decades.

Too often, these adult stories are overlooked. Symptoms like headaches, dizziness, and fatigue can be misunderstood or minimized because “you look fine.” That invisibility adds another layer of challenge for patients who are already carrying so much.

Why Self-Care Matters for Adult Chiari Patients

One of our longtime volunteers and Chiari patients, Christie Cox, often reminds us in her writing and advocacy: self-care isn’t indulgence—it’s self-advocacy. Adults living with Chiari must learn to protect their own energy and mental health if they are to keep advocating for themselves and their care.

Here are three of her self-care strategies that any patient or caregiver can practice:

• Energy mapping: Notice the times of day when you feel your strongest and protect that space for what matters most.
• Micro-resets: Even two minutes of calm breathing or stepping outside can interrupt stress cycles and reduce tension.
• Boundaries as medicine: Saying “no” isn’t weakness. It’s a strategy that preserves energy for healing and advocacy.

How BJCSF Helps

At Bobby Jones CSF, we believe patients thrive when they are supported by informed providers, connected communities, and strong advocates. That’s why your support fuels:

• Groundbreaking medical research into Chiari and related conditions
• Physician training to improve patient care
• Patient and caregiver conferences that bring people out of isolation and into community

Why September Chiari Awareness Month Matters

Chiari Awareness Month is about more than purple ribbons. It’s about visibility and action. Together, we can ensure that adults living with Chiari are no longer invisible, but empowered with resources, support, and hope.

👉 Join us this September. Donate here to help BJCSF continue building the bridges between research, providers, patients, and caregivers.

Because awareness shines a light—but action changes lives.