As we begin this month of awareness, our goal is not only to increase understanding of EDS, Chiari malformation, and syringomyelia and the 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.
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.
In individuals with connective tissue disorders such as any type of EDS, the body’s structural support system, primarily collagen, may be more elastic or fragile than expected. This connective tissue laxity can affect ligaments and supportive structures throughout the body, including those that stabilize the spine and the junction between the skull and cervical spine.
When this support is reduced, it can contribute to mechanical instability and altered biomechanics, which in turn may affect the normal flow of cerebrospinal fluid (CSF) and place stress on the spinal cord and surrounding nerves.
As a result, some individuals may be evaluated for conditions such as:
These conditions are not present in every patient, but they are increasingly recognized as part of a broader pattern of structural and neurological involvement.
A Deeper Look at Two Complex, Often Overlapping Conditions
May is recognized as both Ehlers-Danlos Syndrome (EDS) Awareness Month and Syringomyelia Awareness Month—two conditions that are complex, frequently underdiagnosed, and often misunderstood.
And if we’re being honest, “syringomyelia” is a word many people can’t even pronounce at first—let alone understand or learn how to live with. For many patients, the challenge isn’t just the condition itself—it’s how long it takes to connect the dots.
This month we aim to provide a series of clearer, more integrated understanding of both conditions—and why they are sometimes discussed together.
Ehlers-Danlos Syndrome (EDS) encompasses a group of genetic connective tissue disorders, with the most common form being hypermobile EDS (hEDS). While often initially recognized through joint hypermobility, EDS extends far beyond just flexibility. It is now understood as a multi-system condition that can affect:
Musculoskeletal System
It also is common to see comorbid conditions and symptoms in these systems:
Neurological and Autonomic Systems
Gastrointestinal System
Immune and Mast Cell Involvement
One of the key challenges in EDS is variability. Symptoms can range from mild to severe and may evolve over time, making diagnosis complex and often delayed.
Reference:
Malfait F, et al. (2017)
https://pubmed.ncbi.nlm.nih.gov/28306229/
Syringomyelia is a neurological condition in which a fluid-filled cavity, or syrinx, forms within the spinal cord. Over time, this cavity may expand and interfere with normal nerve function. The spinal cord is responsible for transmitting signals between the brain and body. When a syrinx disrupts these pathways, symptoms may include:
Sensory Changes
Pain
Motor Symptoms
Other Neurological Symptoms
Syringomyelia is frequently associated with conditions that disrupt normal cerebrospinal fluid (CSF) flow, including:
However, the relationship between imaging findings and symptoms is not always straightforward. Some individuals with a syrinx may have minimal symptoms, while others experience significant functional impact.
Reference:
National Institute of Neurological Disorders and Stroke (NINDS)
https://www.ninds.nih.gov/health-information/disorders/syringomyelia
The connection between EDS and syringomyelia lies primarily in structure and fluid dynamics.
In EDS, ligamentous laxity may contribute to instability in the spine or cranio-cervical junction. This instability can alter the normal flow of CSF, particularly in conditions such as Chiari malformation.
Disruptions in CSF flow are one of the key mechanisms believed to contribute to the development of a syrinx.
While research is ongoing, clinicians are increasingly recognizing that for some patients, these conditions are not isolated—but rather part of a larger, interconnected clinical picture.
Reference:
Henderson FC Sr, et al. (2017)
https://pubmed.ncbi.nlm.nih.gov/30062670/
Patients with EDS and/or syringomyelia often encounter similar barriers:
Additionally, many diagnostic tools rely on static imaging, which may not capture dynamic or position-dependent changes in the spine or CSF flow.
As a result, patients may experience prolonged diagnostic journeys before receiving a clear and comprehensive explanation.
Improving awareness of these conditions is not simply about recognition—it is about earlier connection of patterns, more informed evaluation, and better coordinated care.
For patients, this can mean:
For providers, it offers an opportunity to approach complex cases with a more integrated understanding of how connective tissue, structure, and neurological function interact.
For decades, the Bobby Jones Chiari & Syringomyelia Foundation (BJCSF) has played a central role in advancing the understanding of these complex conditions by bringing together leading neurosurgeons, clinicians, and researchers who are actively caring for this patient population. Through scientific meetings, research collaborations, and educational initiatives, BJCSF has helped foster a collaborative community of experts working to refine diagnosis and treatment.
In partnership with the Medical University of South Carolina (MUSC) and the Norris Lab, BJCSF also hosted its first THRIVE Patient Experience Conference in 2025 LINK, creating a space for both scientific exchange and patient-centered learning—with the hope of expanding these efforts in the future.
Support from our community makes this work possible. The Bobby Jones Chiari & Syringomyelia Foundation (BJCSF) relies on donations to advance research, bring together leading experts, and provide trusted education and resources for patients and families navigating these complex conditions. If you would like to help move this work forward, we invite you to make a contribution here: DONATE HERE
