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Not Rare, Just Rarely Diagnosed

Updated: Dec 7, 2023

New research published just last week suggests hypermobile Ehlers Danlos Syndrome (hEDS) and joint hypermobility syndrome (JHS) are 10 times more common than previously thought.

Researchers looked at combined medical records from general practitioners and hospital admission over a period of 27 years. The research found that approximately 1 in 500 people in the database had a diagnosis of either EDS or JHS while the prevalence of EDS is generally quoted as 1 in 5000 (that’s not a typo!). 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.

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.

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.

If you’ve been diagnosed with EDS or JHS and want a healthcare team that knows what it’s like to live with these conditions, then give us a call. We specialize in treating EDS and hypermobility disorders and would love to show you that you can live a life free from pain.

Not Rare, Just Rarely Diagnosed

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