Ehlers-Danlos syndrome

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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.
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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?

  • 4 new patients joined this month
  • 930 say Ehlers-Danlos syndrome is their primary condition

Age
Age Proportion # of patients
<20 27
20s 242
30s 350
40s 324
50s 259
60s 99
70+ 19

Distribution of sex

Sex
Sex Proportion # of patients
Male 104
Female 1221

Types
Condition Types Proportion # of patients
Arthrochalasia 2
Brittle Cornea Syndrome 0
Cardiac-valvular 2
Classical 3
Classical-like 4
Dermatosparaxis 0
Hypermobile 49
Kyphoscoliotic 1
Musculocontractual 1
Myopathic 3
Periodontal 1
Spondylodysplastic 1
Vascular 4
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 730
Not Diagnosed 102

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