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 (3)
2 more
Treatment name(s)

(Leg brace)
Type
Equipment
How many have tried
13
Tried for
pain (9) Ehlers-Danlos syndrome (7)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
12
Tried for
pain (12)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
12
Tried for
pain (12) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Naprosyn)
Type
Prescription Drug
How many have tried
10
Tried for
pain (9) Ehlers-Danlos syndrome (1)
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Type
Procedures
How many have tried
10
Tried for
pain (8) Ehlers-Danlos syndrome (3)
1 more
Treatment name(s)

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

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

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

(Norco)
Type
Prescription Drug
How many have tried
7
Tried for
pain (6) 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 2 more
Total evaluations
17
Tried for
Ehlers-Danlos syndrome (13) pain (3)
2 more
Treatment name(s)

(Leg brace)
Perceived effectiveness
for Ehlers-Danlos syndrome (1 evaluation)
Side effects
soreness
Total evaluations
1
Tried for
pain (9) Ehlers-Danlos syndrome (7)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (9 evaluations)
Side effects
brain fog dizziness 4 more
Total evaluations
8
Tried for
pain (12)
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (6 evaluations)
Side effects
constipation cold sweat 4 more
Total evaluations
6
Tried for
pain (12) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Naprosyn)
Perceived effectiveness
for pain (8 evaluations)
Side effects
digestive disturbances heart palpitations
Total evaluations
9
Tried for
pain (9) Ehlers-Danlos syndrome (1)
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 (8) Ehlers-Danlos syndrome (3)
1 more
Treatment name(s)

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

(Voltaren Gel)
Perceived effectiveness
for pain (5 evaluations)
Side effects
headaches ringing in ears (tinnitus) 3 more
Total evaluations
5
Tried for
pain (8) Ehlers-Danlos syndrome (1)
Treatment name(s)

(BuTrans patch)
Perceived effectiveness
for pain (1 evaluation)
Side effects
rash or skin problems sleepiness
Total evaluations
3
Tried for
pain (7) Ehlers-Danlos syndrome (3)
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (2 evaluations)
Side effects
drowsiness
Total evaluations
2
Tried for
pain (6) 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 35
20s 213
30s 284
40s 237
50s 176
60s 57
70+ 8
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 504
20-29 years 37
30-39 years 24
40-49 years 15
50-59 years 6
60-69 years 0
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 80
Female 934

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 619
Not Diagnosed 89

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