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)

(Home Physical Therapy)
Type
Physical Therapy
How many have tried
15
Tried for
Ehlers-Danlos syndrome (13) pain (4)
2 more
Treatment name(s)

(Leg brace)
Type
Equipment
How many have tried
15
Tried for
pain (10) Ehlers-Danlos syndrome (8)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
11
Tried for
pain (11) Ehlers-Danlos syndrome (3)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
10
Tried for
pain (10)
Treatment name(s)

(Naprosyn)
Type
Prescription Drug
How many have tried
9
Tried for
pain (8) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Flexeril)
Type
Prescription Drug
How many have tried
8
Tried for
pain (8) Ehlers-Danlos syndrome (6)
Treatment name(s)

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

(Norco)
Type
Prescription Drug
How many have tried
7
Tried for
pain (6) Ehlers-Danlos syndrome (2)
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Type
Procedures
How many have tried
7
Tried for
pain (6) Ehlers-Danlos syndrome (3)
1 more
Treatment name(s)

(BuTrans patch)
Type
Prescription Drug
How many have tried
5
Tried for
pain (5) Ehlers-Danlos syndrome (2)

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)

(Home Physical Therapy)
Perceived effectiveness
for Ehlers-Danlos syndrome (11 evaluations)
Side effects
pain muscle pain
Total evaluations
16
Tried for
Ehlers-Danlos syndrome (13) pain (4)
2 more
Treatment name(s)

(Leg brace)
Perceived effectiveness
for pain (1 evaluation)
Side effects
muscle soreness
Total evaluations
2
Tried for
pain (10) Ehlers-Danlos syndrome (8)
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (5 evaluations)
Side effects
cold sweat constipation 4 more
Total evaluations
5
Tried for
pain (11) Ehlers-Danlos syndrome (3)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (8 evaluations)
Side effects
brain fog dizziness 3 more
Total evaluations
7
Tried for
pain (10)
Treatment name(s)

(Naprosyn)
Perceived effectiveness
for pain (7 evaluations)
Side effects
digestive disturbances heart palpitations
Total evaluations
8
Tried for
pain (8) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Flexeril)
Perceived effectiveness
for pain (2 evaluations)
Side effects
sleepiness
Total evaluations
2
Tried for
pain (8) Ehlers-Danlos syndrome (6)
Treatment name(s)

(Voltaren Gel)
Perceived effectiveness
for pain (6 evaluations)
Side effects
headaches ringing in ears (tinnitus) 3 more
Total evaluations
6
Tried for
pain (7) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (2 evaluations)
Side effects
drowsiness
Total evaluations
2
Tried for
pain (6) Ehlers-Danlos syndrome (2)
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Perceived effectiveness
for pain (1 evaluation)
Side effects
itching stinging sensation
Total evaluations
2
Tried for
pain (6) Ehlers-Danlos syndrome (3)
1 more
Treatment name(s)

(BuTrans patch)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (5) Ehlers-Danlos syndrome (2)
  • 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 34
20s 226
30s 292
40s 250
50s 180
60s 68
70+ 8
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 515
20-29 years 38
30-39 years 23
40-49 years 19
50-59 years 7
60-69 years 0
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 84
Female 976

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 640
Not Diagnosed 94

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