Gaps in upper spine may help to diagnose hypermobile EDS

Abnormalities in head posture, upper spine found more common in patients

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

Share this article:

Share article via email
An illustration of a person holding a chest X-ray.

People with hypermobile Ehlers-Danlos syndrome (EDS) often have abnormalities such as small gaps in the upper part of their spine and may hold their heads differently than individuals without the disorder, according to a study that suggests these differences could help with diagnosis and treatment.

The study, “Head Posture and Upper Spine Morphological Deviations in Patients With Hypermobile Ehlers–Danlos Syndrome,” was published in the journal Orthodontics & Craniofacial Research, and was conducted by researchers at the University of Copenhagen and Copenhagen University Hospital, in Denmark.

Like other types of EDS, hypermobile EDS weakens the connective tissues that hold the body in place. In hypermobile EDS, the skin breaks or bruises easily, and the joints are overly flexible and unstable, and can dislocate easily or cause pain. These symptoms mimic those of other diseases, often delaying a diagnosis.

Recommended Reading
main graphic for column titled

When the pain in my shoulder subsides, I know I’m in trouble

EDS symptoms overlap with other conditions

“Symptoms related to EDS overlap with other connective tissue and chronic inflammatory diseases, which is why EDS patients often are diagnosed late and thereby do not receive the treatment and care their condition requires,” the researchers wrote.

In hypermobile EDS, the muscles and ligaments around the spine may also be weaker than normal, potentially causing an abnormal curving of the spine. In the study, the researchers focused on the upper part of the spine and how it differs between people with hypermobile EDS and healthy individuals, based on CT scans.

The study included 27 adults with hypermobile EDS and 39 healthy individuals, mostly women, of around the same mean age (36.4 vs. 31.8 years). While patients had a less pronounced upper and lower jaw and a larger skull base angle, which indicates the tilting of the base of the skull, this didn’t differ significantly from healthy individuals.

Abnormalities in the upper spine were significantly more common in patients (51.9% vs. 15.4%), particularly posterior arch deficiencies (48.1% vs. 12.8%), which refer to missing or lost bone in the vertebrae, or the bones that stack up to form the spine. Of these, partial clefts (openings or gaps) were more common in patients (44.4% vs. 12.8%).

To compare head posture, the researchers looked at X-ray images taken with the head in a natural position. While patients tended to hold their heads in a slightly more extended (tilted back) position than healthy individuals, this difference was not statistically significant.

Overall, the study’s results “may contribute to a further understanding of the postural and spinal phenotypic spectrum in patients with [hypermobile EDS] and thus have implications for the diagnostics and treatment of these patients.”