Some throat problems more common in hypermobile vs. classic EDS, HSD

Common symptoms include acid reflux, dysphagia and dysphonia, survey reveals

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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Many people with Ehlers-Danlos syndrome (EDS) report experiencing throat problems such as acid reflux, dysphagia (difficulty swallowing), and dysphonia (a hoarse voice), a survey study found.

People with hypermobile EDS (hEDS), the most common type of the disease, experienced more severe acid reflux and dysphagia than those with classical EDS (cEDS) or hypermobility spectrum disorder (HSD).

Being aware of these types of manifestations may help doctors “anticipate throat symptoms more readily in this population and provide individualized and more effective management plans for their patients,” researchers wrote.

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The study, “Self-reported throat symptoms in Ehlers–Danlos syndromes and hypermobility spectrum disorders: A cross-sectional survey study,” was published in Laryngoscope Investigative Otolaryngology.

There are many types of EDS, and in all of them the connective tissue fails to provide proper support to other tissues in the body, leading to a range of symptoms. Some symptoms seen across types are hypermobile (loose) joints and stretchy, fragile skin.

While hEDS is better defined by hypermobile joints, or joints that move past the range of motion that is expected or normal, cEDS is characterized by elastic skin and pitted scars. Like hEDS, HSD causes joints to become overly mobile.

Online survey gauges frequency, severity of throat problems

Now, a team of researchers in the U.K. used an online survey to find out how often symptoms related to acid reflux, dysphagia, and dysphonia occur in people with EDS and HSD, and how severe those symptoms are. 

A total of 1,620 patients participated in the survey. The mean age of the group was 38.1 years, and the majority (96.6%) were women. Most had a diagnosis of hEDS (75.5%), followed by HSD (17.8%), and cEDS (3.3%).

To assess acid reflux, the researchers used the Reflux Symptom Index (RSI), a nine-item questionnaire that scores each item from zero (no problem) to five (severe problem). The total score ranges 0 to 45, with a score equal to or greater than 13 indicating significant acid reflux.

On average, patients scored 22.95 points on the RSI score, and most (86.1%) scored 13 points or higher, indicating they experienced severe acid reflux. People with hEDS scored significantly higher (23.44 points) than those with cEDS (22.67) or HDS (20.85 points).

The Eating and Drinking Assessment Tool

The Eating and Drinking Assessment Tool (EAT-10) was used to assess dysphagia. Each item is scored from zero (no problem) to four (severe problem), and the total score can range from 0 to 40. A score equal to or greater than three indicates difficulty swallowing efficiently and safely.

Patients scored an average of 11.91 points in the EAT-10, and most (79.4%) scored three points or higher, indicating they experienced dysphagia. People with hEDS scored the highest — 12.56 points vs. 11.51 in the cEDS group and 9.05 points among those with HSD.

Measuring dysphonia with the Voice Handicap Index

To assess dysphonia, the researchers used the Voice Handicap Index (VHI), where each item is scored from zero (never) to four (always). A total score of 0 to 30 points indicates mild dysphonia, 31 to 60 indicates moderate, and 61 to 120 severe dysphonia.

On average, patients scored 31.99 points on the VHI, and nearly half (47.2%) of patients experienced moderate to severe dysphonia. There were no significant differences between people with hEDS and those with cEDS or HSD.

“People with EDS/HSD experience symptoms of acid reflux, dysphagia and dysphonia to varying degrees with symptoms experienced more severely in hEDS than HSD,” the researchers wrote.

Besides helping doctors better understand and manage these symptoms, “these findings may also act as a guide toward better diagnostic criteria of hEDS and HSD throat symptoms in future,” the researchers concluded.