Marfan syndrome
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- 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 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
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
Perceived effectiveness
for pain (1 evaluation)
Side effects
constipation
Total evaluations
1
Tried for
pain
(1)
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?
- 109 patients have this condition
- 1 new patients joined this month
- 70 say Marfan syndrome is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 4 | |
| 20s | 13 | |
| 30s | 20 | |
| 40s | 18 | |
| 50s | 23 | |
| 60s | 16 | |
| 70+ | 4 |
| 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 | Proportion | # of patients |
|---|---|---|
| Male | 29 | |
| Female | 68 |
| 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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