Ehlers-Danlos Syndromes (EDS)

Ehlers-Danlos Syndromes (EDS) are a group of genetic connective tissue disorders that affect the structure and function of collagen, a vital protein that provides strength and elasticity to tissues. There are 13 different types of EDS, though by far the most common is hypermobile EDS (hEDS) which makes up approximately 90% of cases. EDS is considered a rare disease - however, it is likely that it is perhaps not as rare as once thought, and is perhaps ‘rarely diagnosed’ due to a poor awareness of the condition leading to missed and delayed diagnosis. The condition is hereditary, and genetic testing can help confirm a diagnosis (except in the case of hEDS, which does not yet have an available genetic marker for testing). It can be difficult to differentiate between EDS and other hypermobility spectrum disorders due to significant overlap of symptoms and a lack of a clear diagnostic test, though in most cases this does not make a practical difference to management as they are usually treated in a similar manner.

Symptoms of EDS vary widely depending on the type and the individual presentation, but commonly include joint hypermobility, fragile skin, and chronic pain. Joint subluxations, dislocations, sprains, and other injuries are much more common due to reduced functional stability of the joints. EDS does not just affect the musculoskeletal system, and is associated with a wide range of complications including cardiovascular, gastrointestinal, immune, and hormonal issues. Many conditions frequently co-occur with EDS, including chronic fatigue syndrome, fibromyalgia, autoimmune conditions, and POTS. People with EDS are also more likely to develop long COVID after acute COVID infection.

While there is no cure for EDS, management focuses on improving functional capacity and wellbeing, reducing symptom burden, preventing injuries, and enhancing overall quality of life. This may be achieved through a range of strategies including exercise, lifestyle modifications, assistive equipment, pain management strategies, and targeted treatment of associated conditions and symptoms.