A recent study released by Rheumatology takes a look at the demographics of 280 patients previously diagnosed with hypermobility syndrome. They gathered a cohort of 280 patients – 90% female and 10% male, between ages 18 and 66 (it is generally accepted that females have a higher rate of hypermobility than males, though it is not clear why). 95% of these patients had what was previously known as EDS type 3, now known as hypermobile Ehlers-Danlos Syndrome (hEDS). They proceeded to analyze a comprehensive medical history.

The average age of diagnosis of these patients was 29. 66% of patients had a family history of hypermobility, which corresponds with what we know about the genetic nature of Ehlers-Danlos syndrome. A family history of hypermobility and/or EDS is one of the accepted criteria to be diagnosed with hEDS.

66% of the patients had orthostatic intolerance, meaning their vitals changed dramatically when standing up and returned to “normal” when lying down. This includes drastic increases in heart rate and decreases in blood pressure due to the body’s inability to properly compensate for the challenges of standing upright. Almost half of those with orthostatic intolerance had bowel problems, compared to only 19% without intolerance. 45% had gastrointestinal problems, and 39% had bladder dysfunction. Chronic joint and muscle pain were reported in 91% of the patients. Approximately half of these patients with chronic pain used opioids long-term to relieve their pain. 43% patients reported being on work disability.

While the official clinical diagnoses for hypermobile EDS focus on joint hypermobility and skin hyperextensibility, the study confirms that this particular condition is systemic and also has a high correlation to orthostatic intolerance and chronic pain. Therefore it is important to look at a holistic, overall approach of each patient suspected to have hEDS in order to properly assess how to improve the quality of life of each person living with hEDS.

Ref: Dojcinovska, M., Cohen, H., & Wolman, R. (2019). 200 Demographics and clinical characteristics of a national cohort of 280 patients with hypermobility syndrome and impact on their work disability. Rheumatology, 58(Supplement_3), kez107-016.