Pradeep Chopra MD – Ehlers Danlos Syndrome Part 2

Continuing our quest to understand Ehlers Danlos Syndrome (EDS).  In March 2017, the classification of EDS was updated to include some rare forms of EDS that had been discovered recently. As of now, there are 13 subtypes of EDS. Of the 13 subtypes, only two of them are considered common. Let’s crunch some numbers to see how common or rare EDS is.

The combined prevalence of all types of EDS is at least 1 in 5000 individuals worldwide. But, remember that EDS is rarely diagnosed and often missed, this means that the prevalence is likely to be more than 1 in 5000. I doubt if EDS is over diagnosed, it’s more likely to be a missed diagnosis.

The most common types of EDS are the Hypermobile (hEDS) and the Classical (cEDS) types.

The hypermobile type affects 1 in 5000 (0.02%) to 1 in 20,000 (0.005%) people.

The classical type affects 1 in 20,000 to 1 in 40,000 people.

The value of looking at any statistics makes sense when compared to a number that we all understand.

The worldwide prevalence of

Although EDS is listed officially as a rare disease, physicians are starting to realize that it is not as rare as it was initially thought to be.  This misconception may have risen from the fact that most cases of EDS are missed, undiagnosed or misdiagnosed.  Medical students and physicians have many other things to remember and document (such as if a patient has smoke detectors or guns in their house).  When they are told a condition is rare, they assume that they are not likely to see a case of EDS and so do not need to learn about it. What is worse is that after a person gets diagnosed with EDS, they are told by their doctors that they are “born with it, and nothing can be done about it.” That is an inherently untrue statement that only a lazy health care provider would make. Cystic fibrosis and diabetes are conditions that people are born with, yet we brush them off with a ‘nothing can be done about it.’  A lot of things can be done for people with EDS to get them a good quality of life and be more functional.

EDS is a lifelong condition.  Most people do well until there is a precipitating event like an infection or trauma. They are usually athletic growing up. They are good in activities such as ballet dancing, ice skating, dance, cheerleading.

Disclaimer 

While I make every effort to broadcast correct information, I am still learning.  I will double check all my facts but realize that medicine is a constantly changing science and art.  One doctor may have a different way of doing things from another.  I am simply presenting my views. I welcome any comments, suggestions, or correction of errors.  I take no money from drug or device companies.  By reading this blog, you agree not to use this blog as medical advice to treat any medical condition in either yourself or others, including but not limited to patients that you are treating.  Consult your own physician for any medical issues that you may be having.  This entire disclaimer also applies to any guests or contributors to the blog.  Under no circumstances shall Pradeep Chopra, SNAPA (Center for Complex Conditions), any contributors to the blog, or any employees, associates, or affiliates be responsible for damages arising from the use of the blog.

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