Ehlers-Danlos syndrome

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

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.
Last updated:

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
14
Tried for
Ehlers-Danlos syndrome (11) pain (5)
2 more
Treatment name(s)

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

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

(Flexeril)
Type
Prescription Drug
How many have tried
9
Tried for
pain (9) Ehlers-Danlos syndrome (6)
1 more
Treatment name(s)

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

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

(Naproxen Prescription)
Type
Over the Counter Drug
How many have tried
8
Tried for
pain (7) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
7
Tried for
depressed mood (6) pain (3)
3 more
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)

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

Data from patients with Ehlers-Danlos syndrome, who reported starting treatments within the last 5 years.
Last updated:

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 (11) pain (5)
2 more
Treatment name(s)

(Knee brace)
Perceived effectiveness
for pain (2 evaluations)
Side effects
muscle soreness
Total evaluations
3
Tried for
pain (9) Ehlers-Danlos syndrome (8)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (7 evaluations)
Side effects
brain fog drowsiness 3 more
Total evaluations
6
Tried for
pain (10)
Treatment name(s)

(Flexeril)
Perceived effectiveness
for pain (2 evaluations)
Side effects
sleepiness
Total evaluations
2
Tried for
pain (9) Ehlers-Danlos syndrome (6)
1 more
Treatment name(s)

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

(Norco)
Perceived effectiveness
for pain (2 evaluations)
Side effects
drowsiness
Total evaluations
2
Tried for
pain (8) Ehlers-Danlos syndrome (1)
Treatment name(s)

(Naproxen Prescription)
Perceived effectiveness
for pain (4 evaluations)
Side effects
digestive disturbances
Total evaluations
5
Tried for
pain (7) Ehlers-Danlos syndrome (2)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for depressed mood (3 evaluations)
Side effects
nausea anxious mood 2 more
Total evaluations
3
Tried for
depressed mood (6) pain (3)
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 (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
  • 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.
Last updated:

Who has Ehlers-Danlos syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 40
20s 229
30s 303
40s 273
50s 198
60s 74
70+ 10
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 528
20-29 years 45
30-39 years 25
40-49 years 21
50-59 years 8
60-69 years 0
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 92
Female 1039

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 670
Not Diagnosed 99

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