Ehlers-Danlos Syndrome (EDS) is controversial because it’s misunderstood, underdiagnosed, and stigmatized.

A quote from The Ehlers-Danlos Society’s website states:

“We believe that hEDS and HSD are two of the most misunderstood conditions of our time, and we look forward to a time when robust research with clean phenotyped data can show that both hEDS and HSD are common, as we believe, anecdotally, them to be.” 

“We, and many expert clinicians believe that HSD and hypermobile EDS (hEDS) are more common than currently recognized. However, it is also important to remember that most types of EDS are rare to ultra-rare.” 

The fact is, EDS is still misunderstood by many physicians, exactly because of its rarity. In order to be referred to a competent geneticist with knowledge of EDS, patients must still be correctly diagnosed by what I refer to as “their first line of defense” (that is, the doctors who they are more likely to see for their symptoms). This includes general practitioners as well as pain management specialists. Unfortunately, many patients slip through the proverbial cracks in that system. Patients who fall anywhere within the hypermobility spectrum, and those with EDS, continue to suffer due to medical misinformation and mistakes, as well as from a general lack of awareness of and information about the complexities of these complex disorders.

Misunderstood 

Underdiagnosed

Stigmatized

 

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