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 with Ehlers-Danlos syndrome

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Knee brace)
Type
Equipment
How many have tried
12
Tried for
Ehlers-Danlos syndrome (8) pain (8)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
11
Tried for
pain (10) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Mobic)
Type
Prescription Drug
How many have tried
7
Tried for
pain (5) Ehlers-Danlos syndrome (3)
Treatment name(s)

(Home Physical Therapy)
Type
Physical Therapy
How many have tried
7
Tried for
Ehlers-Danlos syndrome (6) pain (3)
2 more
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
7
Tried for
pain (7) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Cannabidiol CBD oil)
Type
Other
How many have tried
6
Tried for
pain (6) anxious mood (5)
3 more
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Type
Procedures
How many have tried
6
Tried for
pain (5) Ehlers-Danlos syndrome (3)
1 more
Treatment name(s)

(Manual fold up)
Type
Equipment
How many have tried
6
Tried for
fatigue (5) Ehlers-Danlos syndrome (4)
1 more
Treatment name(s)

(BuSpar)
Type
Prescription Drug
How many have tried
5
Tried for
anxious mood (4) depressed mood (2)
1 more
Treatment name(s)

(Flexeril)
Type
Prescription Drug
How many have tried
5
Tried for
pain (5) Ehlers-Danlos syndrome (4)
1 more

Data from patients with Ehlers-Danlos syndrome, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with Ehlers-Danlos syndrome

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Knee brace)
Perceived effectiveness
for Ehlers-Danlos syndrome (4 evaluations)
Side effects
muscle soreness
Total evaluations
6
Tried for
Ehlers-Danlos syndrome (8) pain (8)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (7 evaluations)
Side effects
brain fog constipation 18 more
Total evaluations
7
Tried for
pain (10) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Mobic)
Perceived effectiveness
for pain (3 evaluations)
Side effects
dizziness tachycardia (fast heart rate)
Total evaluations
5
Tried for
pain (5) Ehlers-Danlos syndrome (3)
Treatment name(s)

(Home Physical Therapy)
Perceived effectiveness
for Ehlers-Danlos syndrome (9 evaluations)
Side effects
Total evaluations
9
Tried for
Ehlers-Danlos syndrome (6) pain (3)
2 more
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (5 evaluations)
Side effects
drowsiness constipation 3 more
Total evaluations
5
Tried for
pain (7) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Cannabidiol CBD oil)
Perceived effectiveness
for pain (4 evaluations)
Side effects
Total evaluations
4
Tried for
pain (6) anxious mood (5)
3 more
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Perceived effectiveness
for pain (2 evaluations)
Side effects
itching stinging sensation
Total evaluations
3
Tried for
pain (5) Ehlers-Danlos syndrome (3)
1 more
Treatment name(s)

(Manual fold up)
Perceived effectiveness
for fatigue (3 evaluations)
Side effects
dislocated shoulder dislocation 1 more
Total evaluations
3
Tried for
fatigue (5) Ehlers-Danlos syndrome (4)
1 more
Treatment name(s)

(BuSpar)
Perceived effectiveness
for anxious mood (4 evaluations)
Side effects
headaches increased anxiety 2 more
Total evaluations
4
Tried for
anxious mood (4) depressed mood (2)
1 more
Treatment name(s)

(Flexeril)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (5) Ehlers-Danlos syndrome (4)
1 more
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with Ehlers-Danlos syndrome, who reported starting treatments within the last 5 years.
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Who has Ehlers-Danlos syndrome on PatientsLikeMe?

  • 6 new patients joined this month
  • 916 say Ehlers-Danlos syndrome is their primary condition

Age
Age Proportion # of patients
<20 37
20s 242
30s 346
40s 314
50s 248
60s 96
70+ 17

Distribution of sex

Sex
Sex Proportion # of patients
Male 103
Female 1202

Types
Condition Types Proportion # of patients
Arthrochalasia 1
Brittle Cornea Syndrome 0
Cardiac-valvular 1
Classical 2
Classical-like 3
Dermatosparaxis 0
Hypermobile 38
Kyphoscoliotic 1
Musculocontractual 1
Myopathic 2
Periodontal 0
Spondylodysplastic 0
Vascular 2
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 726
Not Diagnosed 102

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