Marfan syndrome

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What is Marfan syndrome?

Marfan's syndrome is a disorder of the connective tissue that is characterized by loss of elasticity. It affects most organs and tissues, especially the skeleton, lungs, eyes, heart, and the aorta.

Common symptoms reported by people with Marfan 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 Marfan syndrome

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

(Celebrex)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Cannabidiol/Tetrahydrocannabinol Balanced Mixture)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)

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

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

(Celebrex)
Perceived effectiveness
for pain (1 evaluation)
Side effects
constipation
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(Cannabidiol/Tetrahydrocannabinol Balanced Mixture)
Perceived effectiveness
for pain (2 evaluations)
Side effects
fibro fog
Total evaluations
2
Tried for
pain (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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


Age
Age Proportion # of patients
<20 4
20s 14
30s 19
40s 18
50s 22
60s 15
70+ 4
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 39
20-29 years 7
30-39 years 2
40-49 years 3
50-59 years 0
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 29
Female 66

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 59
Not Diagnosed 5

These charts show data from Marfan syndrome patients who have completed their condition history
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