Ehlers-Danlos syndrome
Ehlers-Danlos syndrome
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome (EDS) is considered a rare condition, although its prevalence is difficult to determine precisely due to variations in diagnostic criteria and awareness among healthcare professionals. It’s estimated to affect about 1 in 5,000 to 20,000 individuals worldwide. However, some experts believe that EDS may be underdiagnosed due to its wide range of symptoms and variability in presentation.

What is Ehlers-Danlos syndrome
As stated in by the Ehlers-Danlos Society, Ehlers-Danlos syndromes (EDS) is defined as a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility.
There are several types of Ehlers-Danlos Syndrome, each with its own set of symptoms and characteristics. The most common types include:
Should you test for Ehlers-Danlos Syndrome?
It’s important for Chiari Malformation /Syringomyelia patients to be tested for Ehlers-Danlos Syndrome (EDS) because EDS can significantly affect diagnosis, treatment, and surgical outcomes.
EDS Can Affect Surgical Outcomes
EDS is a connective tissue disorder that causes joint hypermobility and tissue fragility. If someone with Chiari also has EDS, they may be more prone to complications after decompression surgery, such as poor healing, cerebrospinal fluid leaks, or instability in the cervical spine.
It May Explain Unusual Symptoms
EDS can cause additional symptoms like joint pain, dislocations, digestive issues, fatigue, and autonomic dysfunction—all of which may not be fully explained by Chiari alone. Recognizing EDS helps create a more complete understanding of the patient’s condition.
Instability Risks
People with EDS are at higher risk for craniocervical instability (CCI) or atlantoaxial instability (AAI), which can worsen Chiari symptoms or mimic them. Diagnosing EDS can prompt imaging studies to check for these issues before pursuing surgery.
Treatment Plans Must Be Adjusted
Physical therapy, pain management, and surgical strategies must be tailored for those with both conditions. What works for someone with Chiari alone may not be safe or effective for someone with both Chiari and EDS.
ASAP and Ehlers-Danlos syndrome
Past conferences we have featured Ehlers-Danlos syndrome (EDS) with these speakers below.
2024 Conference:
Connective Tissue Disorders and Ehlers-Danlos Syndrome (EDS) & Chiari – Vincent Martin, MD
2022 Conference Pain and EDS
Dr. Ruhoy
2022 Conference Neuropsychiatric Manifestations of Mast Cell
Dr. Maitland