Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison

What is it about?

The Ehlers-Danlos Syndromes (and other inherited connective tissue disorders) are generally thought of as rare and difficult to diagnose. This is party because they can affect any part of the body. Although early detection is important, it often takes many years for people to be diagnosed. In our research we asked two questions:
1.	How common are the Ehlers-Danlos Syndromes (and the related conditions called Hypermobility Spectrum Disorders)? 
2.	Are these conditions associated with more diagnoses affecting different parts of the body, and the use of more prescription drugs?
Using an anonymised database of GP and hospital records in Wales (UK), we looked for people diagnosed with one of these conditions between 1990 and 2017 (our ‘cases’) and then found people the same age and sex without these conditions (our ‘controls’). We then compared the two groups, looking for differences in other diagnoses and numbers of prescriptions. We found that these conditions are already diagnosed in 1 person out of every 500, which means they are not rare. The conditions are associated with a significantly higher likelihood of other diagnoses affecting most body systems, such as mental health, nervous and digestive systems, in both adults and children. Also, affected adults and children were prescribed significantly more prescriptions in nearly all drug categories compared with our control group. These findings should be important for policy makers and service planning. More research is desperately needed to examine these findings in more detail.


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