New research shows hEDS and HSD 10 times more common than previously thought
- 5 November, 2019
- Ehlers-Danlos in the news
New research published today suggests hypermobile EDS (hEDS) and hypermobility spectrum disorder (HSD), previously known as joint hypermobility syndrome (JHS), are 10 times more common than previously thought.
Researchers from Swansea and Cardiff universities looked at combined medical records from GP practices and hospital admissions in Wales over a period of 27 years, from 1990 to 2017.
The research, published in BMJ Open and led by Dr Joanne Demmler, found that 6021 individuals in the database had a diagnosis of either ‘EDS’ or ‘JHS’ which equated to approximately 1 in 500 people. The prevalence of EDS is generally quoted as 1 in 5000. Seventy percent of the individuals with EDS or JHS were female and thirty percent were male. The study also found that women with these conditions were generally diagnosed almost nine years later than men. It is interesting to note that the rate of diagnosis steadily increased over the 27 year period examined, perhaps reflecting increased awareness of the conditions during that time.
Compared to people of the same gender and age without a connective tissue disorder, those with EDS or JHS were much more likely to be diagnosed with other conditions in the year before or after their EDS or JHS diagnosis.
EDS UK’s primary care adviser Dr Emma Reinhold, also involved in the research, said “So many patients, especially women, have been dismissed by the healthcare system often for years, despite significant symptoms. Now that doctors and patients alike can see that these conditions are not rare and are associated with such widespread problems throughout the body, we hope that there will be a revolution in recognition, and also that healthcare planners will be able to see the need for different services for the large number of affected individuals. A simple diagnosis and the validation this brings to a patient cannot be underestimated. We hope this study will move EDS from a ‘rare disease’ silo to the mainstream of medical practice”.
This important research contributes much-needed evidence to the debate about whether hEDS and HSD are rare conditions or not and aligns with EDS UK’s experience that they are much more common than previously thought.
Image by StockSnap from Pixabay.