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)

(Neurontin)
Type
Prescription Drug
How many have tried
14
Tried for
pain (13) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Knee brace)
Type
Equipment
How many have tried
13
Tried for
Ehlers-Danlos syndrome (9) pain (8)
Treatment name(s)

(Home Physical Therapy)
Type
Physical Therapy
How many have tried
11
Tried for
Ehlers-Danlos syndrome (9) pain (4)
2 more
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
9
Tried for
pain (9) Ehlers-Danlos syndrome (3)
Treatment name(s)

(Flexeril)
Type
Prescription Drug
How many have tried
8
Tried for
pain (8) Ehlers-Danlos syndrome (5)
1 more
Treatment name(s)

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

(Manual fold up)
Type
Equipment
How many have tried
7
Tried for
fatigue (6) Ehlers-Danlos syndrome (3)
1 more
Treatment name(s)

(BuSpar)
Type
Prescription Drug
How many have tried
6
Tried for
anxious mood (5) depressed mood (3)
1 more
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)

(Cymbalta)
Type
Prescription Drug
How many have tried
6
Tried for
depressed mood (5) pain (2)
3 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)

(Neurontin)
Perceived effectiveness
for pain (10 evaluations)
Side effects
drowsiness nausea 19 more
Total evaluations
9
Tried for
pain (13) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Knee brace)
Perceived effectiveness
for Ehlers-Danlos syndrome (3 evaluations)
Side effects
muscle soreness
Total evaluations
5
Tried for
Ehlers-Danlos syndrome (9) pain (8)
Treatment name(s)

(Home Physical Therapy)
Perceived effectiveness
for Ehlers-Danlos syndrome (9 evaluations)
Side effects
muscle pain
Total evaluations
10
Tried for
Ehlers-Danlos syndrome (9) pain (4)
2 more
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (6 evaluations)
Side effects
drowsiness constipation 4 more
Total evaluations
6
Tried for
pain (9) Ehlers-Danlos syndrome (3)
Treatment name(s)

(Flexeril)
Perceived effectiveness
for pain (2 evaluations)
Side effects
sleepiness
Total evaluations
2
Tried for
pain (8) Ehlers-Danlos syndrome (5)
1 more
Treatment name(s)

(Mobic)
Perceived effectiveness
for pain (2 evaluations)
Side effects
dizziness
Total evaluations
4
Tried for
pain (5) Ehlers-Danlos syndrome (3)
Treatment name(s)

(Manual fold up)
Perceived effectiveness
for fatigue (3 evaluations)
Side effects
dislocated shoulder dislocation 1 more
Total evaluations
4
Tried for
fatigue (6) Ehlers-Danlos syndrome (3)
1 more
Treatment name(s)

(BuSpar)
Perceived effectiveness
for anxious mood (5 evaluations)
Side effects
headaches hyperactivity 3 more
Total evaluations
5
Tried for
anxious mood (5) depressed mood (3)
1 more
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)

(Cymbalta)
Perceived effectiveness
for depressed mood (3 evaluations)
Side effects
nausea anxious mood 4 more
Total evaluations
3
Tried for
depressed mood (5) pain (2)
3 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?


Age
Age Proportion # of patients
<20 43
20s 231
30s 336
40s 294
50s 217
60s 85
70+ 15
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 545
20-29 years 48
30-39 years 26
40-49 years 23
50-59 years 8
60-69 years 0
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 98
Female 1128

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 701
Not Diagnosed 99

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