May is recognized as both Ehlers-Danlos Syndrome (EDS) Awareness Month and Syringomyelia Awareness Month—two conditions that are complex, often underdiagnosed, and frequently misunderstood.
And if we’re being honest, “syringomyelia” is a word many people can’t even pronounce at first—let alone understand or live with. This month is about changing that.
Learn more about syringomyelia
Learn more about Ehlers-Danlos syndrome.
This May, in recognition of Ehlers-Danlos Syndrome (EDS) and Syringomyelia Awareness Month, the Bobby Jones Chiari & Syringomyelia Foundation (BJCSF) is proud to partner with board-certified patient advocate and author Christie Cox, known for her book Holding It All Together When You’re Hypermobile, to bring our community a special series of educational content.
Christie brings both lived experience and a deep commitment to translating complex medical information into practical, accessible guidance. Through this collaboration, she is contributing a series of articles to help patients, caregivers, and providers better understand these often-overlapping and frequently misunderstood conditions.
Plus, we are also excited to introduce a new resource for the BJCSF community: Crafting Healing Narratives, a six-module video course designed to help patients learn how to tell their patient story. This course offers a structured approach to storytelling as a therapeutic tool, guiding participants in making sense of their experiences, communicating more effectively, and, for those interested, developing their work toward publication as presented by a best-selling author. More information on the course is coming soon.
As we begin this month of awareness, our goal is not only to increase understanding of EDS, syringomyelia and related conditions, but to empower patients and families to better recognize patterns, ask more informed questions, and to find their voice within their healthcare journey.
Because awareness does not begin with a diagnosis, it begins with understanding. That can also mean increasing a sense of your own self-awareness, not just awareness of the disorders as we honor them this month.
And that is where we begin this month together.
When Symptoms Don’t Match the Scan
Preparing for Medical Visits with Complex Conditions
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This May awareness content series, along with the Crafting Healing Narratives video course coming out soon, is a collaborative effort between patient advocate and author Christie Cox and the Bobby Jones Chiari & Syringomyelia Foundation (BJCSF). Together, this partnership brings both lived experience and clinical insight to help patients better understand complex conditions, navigate their care, and find meaningful ways to process and share their stories. We hope you have enjoyed it.
To read more from Christie Cox or to subscribe for her weekly digest of her writing, programming and events, go to https://authory.com/ChristieCox. Stay tuned for her new book due out later in 2026 on special nervous system regulation skills critical with chronic conditions that often include dysregulation and autonomic dysfunction.
