The Ehlers-Danlos Syndromes

The Ehlers Danlos syndromes (EDS) are a group of genetic connective tissue disorders characterized by joint hypermobility, skin hyper-extensibility, and tissue fragility. There is considerable phenotypic and genetic variation among the 14 recognized subtypes of EDS. No two patients with EDS are exactly the same, and it is important to recognize that EDS can occur on a spectrum and symptoms can vary from day to day and from person to person.

What are the symptoms of EDS?

hEDS  is characterized by generalized joint hypermobility, musculoskeletal manifestations, gastrointestinal symptoms, cardiovascular involvement, and mild skin manifestations, including abnormal scarring and skin hyper-extensibility. In addition to these primary features, individuals with hEDS often present with various comorbid conditions, such as dysautonomia/POTS (postural orthostatic tachycardia syndrome) and mast cell activation syndrome (MCAS)

How Common is EDS?

The various subtypes of EDS have different frequencies in the general population, with some being exceptionally rare and affecting only a small number of individuals worldwide. However, other types, such as hypermobile EDS (hEDS), have a much higher prevalence. The exact prevalence rates of EDS subtypes are challenging to determine due to several factors. Firstly, EDS is often underdiagnosed or misdiagnosed, leading our estimates to be based on 'diagnosed prevalence'. Some estimates suggest that the diagnosed prevalence of hEDS may be as common as 1 in 500 individuals. However, it is important to note that this estimate may still vary depending on geographical location, population demographics, age, sex, and diagnostic criteria utilized. Social determinants of health also play a role in people's access to diagnoses. Some clinicians argue that hEDS might be even more common than 1 in 500. However, without reliable biomarkers or genetic tests for hEDS, it is challenging to pinpoint the exact prevalence. Currently, it may be best to consider all types of EDS except for hEDS as rare diseases.

What is Hypermobility Spectrum Disorder (HSD)?

Coming Soon...

What comorbidities can people with EDS have?

Coming Soon...

Does joint hypermobility always mean EDS or HSD?

No! Hypermobility can be trained or benign. That is why it is important to consider the entire health picture and not just joint hypermobility when discussing connective tissue disorders.

I think I might have EDS, now what?

Coming Soon...

Where can I learn more about EDS?

Check out the links below, as well as my Instagram or Facebook pages, and a literature review I co-authored on EDS for more information!

Ehlers Danlos Society

Bobby Jones CSF

Dysautonomia International

This page was last updated on July 11, 2023.