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What is the prevalence of Ehlers Danlos?

How many people does Ehlers Danlos affect? Does it have the same prevalence in men and women? And in the different countries?

Prevalence of Ehlers Danlos

The prevalence of Ehlers Danlos syndrome (EDS) varies depending on the specific type. The most common type, hypermobile EDS, is estimated to affect around 1 in 5,000 individuals worldwide. Other types, such as classical EDS, vascular EDS, and others, are rarer with prevalence rates ranging from 1 in 20,000 to 1 in 200,000. EDS is a group of genetic connective tissue disorders characterized by joint hypermobility, skin fragility, and other symptoms. Early diagnosis and proper management are crucial for individuals with EDS to improve their quality of life.



Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect the connective tissues in the body. It is estimated that EDS affects approximately 1 in every 5,000 to 20,000 individuals worldwide, making it a relatively rare condition.



There are several subtypes of EDS, each with its own prevalence rate. The most common subtype, known as hypermobile EDS (hEDS), is estimated to affect around 1 in every 5,000 individuals. Other subtypes, such as classical EDS (cEDS) and vascular EDS (vEDS), are much rarer, with prevalence rates of approximately 1 in every 20,000 to 40,000 individuals.



It is important to note that due to the variability in symptoms and the underdiagnosis of EDS, the true prevalence may be higher than currently reported. EDS can affect individuals of any gender, race, or age group.



Early diagnosis and proper management are crucial in improving the quality of life for individuals with EDS. If you suspect you or someone you know may have EDS, it is recommended to consult with a healthcare professional who can provide a comprehensive evaluation and appropriate care.


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14 answers
The last data say 1 in 5,000 but probably way more. What happens is that this is a syndrome that not many doctors know about. So this means that even if there are more people who have it, their doctors won't know what it is and they will live undiagnosed. Supposedly it affects more women but that might be because statistically women complain more about their pain than man.

My mother and my grandmother were diagnosed because I started doing research on my problems and discovered EDS.

Posted May 25, 2017 by Maria 2051
Eds is more common among women although it is not rare for men to have it to. A lot of people are hypermobile with no pain and problems.
The prevalence is 1 in 5000 i think

Posted May 27, 2017 by Jude 2050
Each type is different. Typically all EDS is RARE although some think it's not as rare as originally thought but falsely diagnosed as fibromyalgia

Posted May 28, 2017 by Celi 2000
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.

Posted May 31, 2017 by KathrynOConnor 2200
EDS affects men and women both equally but unfortunately it tends to show more effects on women because of our hormonal build

Posted Sep 27, 2017 by Lbond94 4100
It is suppsably pretty rare but we believe it's just not diagnosed properly a lot of the time

Posted Oct 6, 2017 by Sasha 2050
1.5 million people world wide

Posted Oct 7, 2017 by Sharon 7050
Older EDS information prevalence is said to be 1/10,000 to 1/25,000 with approximately 20,000 to 50,000 in the US alone. Recent epidemiology says it's closer to 1/5,000 with 1.5 million cases reported Worldwide. Diagnosis is difficult due to the fact that children are naturally more flexible, and men are less likely to seek medical assistance than females. Age and the natural aging process contributes to increased diagnosis later in life.

Posted Oct 25, 2017 by Dolores 3050
All types of EDS combined are estimated to occur in 1 in 5000 people. There are fewer than 200000 cases in the US per year.

Posted Jan 14, 2018 by stairphobe 3070
Eds is 1 in 5,000 but doctors believe that it is underdiagnosed

Posted Sep 29, 2019 by Amy 13500
At this time, research statistics of the Ehlers-Danlos syndromes show the total prevalence as 1 in 2,500 to 1 in 5,000 people. Recent clinical experience suggests that Ehlers-Danlos syndrome may be more common. The conditions are known to affect both males and females of all racial and ethnic backgrounds.

Posted Mar 11, 2020 by MegTheMariner 1870
1/5000 people have hypermobile EDS, with other subtypes being much rarer.

Posted May 12, 2020 by Alex 3551
Sorry I don't have any information about that

Posted Nov 19, 2021 by NuNu 2550

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EHLERS DANLOS STORIES
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Eu nasci com Síndrome de Ehlers-Danlos, afinal a Síndrome de Ehlers-Danlos é uma doença genética. Eu descobri que tinha Síndrome de Ehlers-Danlos aos 45 anos, por acaso. Vendo uma apresentação sobre Score de Beighton (método de avaliaçã...
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I suffered my entire life with issues and signs of Hypermobile type Ehlers-Danlos Syndrome, including extreme flexbility as a child that I "grew out of" in my young adulthood, slowlyl stiffening with age and early onset arthritis. Like too many, doct...
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Lost all my friends all I know is chronic pain, 29 years has passed in a blink of an eye. I am lonely depressed and given up on by doctors who just label me and close the door. Stick me on meds and shut me up. I have degeneration in my spine 3 hernia...
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I have always been sick all my life, not knowing why. When I started taking my BP more frequently, I realized alot of my symptoms were BP related, thus since been dx with dysautonomia, due to EDS. Before this time, I had pursued answers, with many cl...
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I'm 54 years old and have had to learn to "just live with it". Stretchy skin and bendy joints have the pain in my life. My skin has been so thin that what would be a bruse for a normal person was a laceration for me. My knees are a wreck. My body hur...

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Ehlers Danlos forum

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Ehlers Danlos forum
We were in a car accident several months ago. Before that, I was hypermobile, but not as badly as I am now. Could the trauma of the accident trigger more issues with my connective tissue overall? For example, even though my feet/legs were uninjured, ...
Ehlers Danlos forum
So in the past 2-3 months i have been doing acupunture but after wards im in so much pain to wear my doctor puts the needles, does this happen to you?
Ehlers Danlos forum
The doctor has recommended exercise and physiotherapy to strengthen the muscles of my son and, then, protect his joints... anybody can advise in what kind of exercises or sport? I thin swimming may be the best option… Many thanks!
Ehlers Danlos forum
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