What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome is a group of disorders that affect connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs. All types of Ehler-Danlos syndrome affect the joints and many also affect the skin.

How do members experience Ehlers-Danlos syndrome?

Top 5 symptoms reported by people with Ehlers-Danlos syndrome*

*Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.

Top treatments taken by people for Ehlers-Danlos syndrome*

Who has Ehlers-Danlos syndrome on PatientsLikeMe?

Age

Age Proportion # of patients
<20 35
20s 305
30s 412
40s 435
50s 377
60s 197
70+ 67

Distribution of sex

Sex

Sex Proportion # of patients
Male 133
Female 1,641

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What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome is a group of disorders that affect connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs. All types of Ehler-Danlos syndrome affect the joints and many also affect the skin.



Common symptoms reported by people with Ehlers-Danlos syndrome

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
Last updated:



Treatments taken by people for Ehlers-Danlos syndrome

Let’s build this page together! When you share what it’s like to have Ehlers-Danlos syndrome through your profile, those stories and data appear here too.

Got a question about living with Ehlers-Danlos syndrome? Members in the forum might have the answers.


Compare treatments taken by people with Ehlers-Danlos syndrome

Let’s build this page together! When you share what it’s like to have Ehlers-Danlos syndrome through your profile, those stories and data appear here too.

Got a question about living with Ehlers-Danlos syndrome? Members in the forum might have the answers.



Who has Ehlers-Danlos syndrome on PatientsLikeMe?

  • 9 new patients joined this month
  • 1,217 say Ehlers-Danlos syndrome is their primary condition

Age
Age Proportion # of patients
<20 35
20s 305
30s 412
40s 435
50s 377
60s 197
70+ 67

Distribution of sex

Sex
Sex Proportion # of patients
Male 133
Female 1,641

Types
Condition Types Proportion # of patients
Arthrochalasia 6
Brittle Cornea Syndrome 1
Cardiac-valvular 2
Classical 8
Classical-like 11
Dermatosparaxis 1
Hypermobile 124
Kyphoscoliotic 2
Musculocontractual 4
Myopathic 3
Periodontal 4
Spondylodysplastic 3
Vascular 7
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 771
Not Diagnosed 108

These charts show data from Ehlers-Danlos syndrome patients who have completed their condition history
Last updated: