Understanding Ehlers-Danlos Syndrome By: Emma French


What is Ehlers-Danlos Syndrome? An Introduction to EDS

Ehlers-Danlos Syndrome, or EDS, is a group of 13 inherited disorders that affect the connective tissues in the body. The tissues affected are those that provide support and give flexibility to the skin, joints, vessels, and organs.




A unique set of features is created from each type of EDS, which can result in types like Hypermobile EDS, which is distinguished by its joint hypermobility, joint instability, and chronic pain, and is also the most common, according to a chart from The Ehlers-Danlos Society (2017). Within the various types, rare forms can lead to life-threatening health issues. The most serious type is vascular EDS, which affects the blood vessels and can lead to abrupt ruptures. 


Because there are so many types of EDS that are severe or can create severe problems, it's important that these forms are researched and specified so that the right treatment can be given depending on what's affecting them. And it's not just disadvantages people face because of it; EDS can create other serious lifelong problems in addition to itself; for example, very flexible joints can lead to frequent dislocations and an earlier risk of developing arthritis.


EDS is most often caused by the disorder being biologically passed down from parent to child; there is no specific demographic of people who are more likely to develop EDS.

The Information We Have On EDS

Some symptoms of EDS are common across all types, such as joint hypermobility, pain, and fatigue, while other symptoms can only be observed in specific types of EDS. Even people with the same type can experience very different symptoms from each other, and EDS can also frequently occur with comorbidities or comorbid conditions, which can make dealing with it very tricky.


According to the Mayo Clinic (2017), a healthcare professional will diagnose Ehlers-Danlos Syndrome after they learn about your health, family history, and do a physical exam. They ask if you suffer from joint pain or exhibit signs of flexible joints or stretchy skin and ask whether people in your family have similar issues or have been specifically diagnosed with EDS. If they find you check all these boxes, it's usually enough for them to make a diagnosis. 


There is no current cure for EDS, but there are various types of treatment for it, like physical therapy and braces for extra joint support. There are also research programs dedicated to understanding EDS and furthering our knowledge on it. One example of this is HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation), a global genetic research initiative led by The Ehlers-Danlos Syndrome system to understand the biological and genetic causes.


Awarness

Awareness towards EDS is important because some research, like the (EDS Research | The Norris Lab, 2025), claims that there are studies that suggest EDS is more common than thought to be; they say, “Hypermobile EDS (hEDS) is the most common type, estimated to affect around 1 in 500 individuals, with varying degrees of severity and presentation.” In addition, found on the same site, Professor Rodeny Grahme says, “No other condition in modern history has been as neglected in such a way as Ehlers-Danlos syndrome.” This is exactly why more people need to be aware of this genetic condition, because this information proves that there could be a large group of people walking around with EDS knowing nothing about it, and depending on the severity of what EDS they could have, it could have heavily affected their life with no way to currently help or treat it from them not even knowing of it.


To conclude, EDS is an extremely overlooked condition, and it's important we put more focus into it so we can better understand it and treat those or give those the support they need to get through it.

References

The Ehlers-Danlos Society. (2017). What is EDS? The Ehlers-Danlos Society. https://www.ehlers-danlos.com/what-is-eds/


Mayo Clinic. (2017). Ehlers-Danlos syndrome - Diagnosis and treatment - Mayo Clinic.https://www.mayoclinic.org/diseases-conditions/ehlers-danlos


EDS Research | The Norris Lab. (2025). The Norris Lab. https://www.thenorrislab.com/copy-of-eds-research


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