EDS Types and Prevalence
Ehlers-Danlos Syndrome (EDS) Types:
EDS is a genetic syndrome and is diagnosed by a specialist, usually a Geneticist or Rheumatologist, with extensive knowledge about EDS and its types:
Read more at “So you think you might have EDS”
Ehlers-Danlos Syndrome (EDS) Prevalence:
“EDS is not a rare disorder — It’s just RARELY Diagnosed!”
To learn more about this common misconception (that EDS is rare), watch this video presentation by Dr. Derek Neilson, Geneticist and EDS expert.
Fibromyalgia and Chronic Fatigue Syndrome are common misdiagnoses or co-diagnoses. EDS may be misdiagnosed as other conditions, such as MS, Lupus, or a different connective tissue disorder. Consult a knowledgeable Geneticist for proper diagnosis.
- 95% of sufferers remain undiagnosed or misdiagnosed due to physician oversight or lack of knowledge about EDS. That’s 650,000 Americans each year whose diagnosis is missed & continue to suffer without an explanation. This data was extrapolated by Dr. Rodney Grahame’s study conducted in the UK.*
- Only 5% of EDS sufferers are diagnosed*.
- According to an EDSawareness.com poll of 1,956 EDS patients: Only 31% were diagnosed in < 10 years. It took more than 20 years for 51% of them!
* Dr. Rodney Grahame’s 2011 presentation “EDS—A Rheumatologist’s Perspective Over Four Decades” describes the misunderstanding that hypermobility syndrome and EDS are separate conditions, and that EDS is probably the most under-diagnosed disorder in the world. Learn more about this EDS study conducted in the UK.
Prevalence according to the NIH:
Many Internet sources reference prevalence statistics from the NIH. However, EDS experts believe these to be very conservative estimates. Listen to Dr. Derek Neilson’s presentation for updated information about the prevalence of EDS. Dr. Francomano’s presentation also supports that prevalence is underestimated, and provides a good overview of how EDS affects multiple body systems.
The NIH states, “Although it is difficult to estimate the overall frequency of Ehlers-Danlos syndrome, the combined prevalence of all types of this condition may be about 1 in 5,000 individuals worldwide. The hypermobility and classical forms are most common; the hypermobility type may affect as many as 1 in 10,000 to 15,000 people, while the classical type probably occurs in 1 in 20,000 to 40,000 people.
Other forms of Ehlers-Danlos syndrome are very rare. About 30 cases of the arthrochalasia type and fewer than 60 cases of the kyphoscoliosis type have been reported worldwide. About a dozen infants and children with the dermatosparaxis type have been described. The vascular type is also rare; estimates vary widely, but the condition may affect about 1 in 250,000 people.”
Read more at: http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome
* Dr. Rodney Grahame’s EDS study conducted in the UK