Susac syndrome

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What is Susac syndrome?

Susac's syndrome is a rare condition characterized by three main issues: impaired brain function (encephalopathy), blockage of the arteries that supply blood to the retina (branch retinal artery occlusion), and hearing loss.

Common symptoms reported by people with Susac 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 Susac syndrome

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

(Xanax)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)
Type
Supplement
How many have tried
1
Tried for
fatigue (1)
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
1
Tried for
Susac syndrome (1)

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

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

(Xanax)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
excessive daytime sleepiness (somnolence)
Total evaluations
1
Tried for
anxious mood (1)
Treatment name(s)
Perceived effectiveness
for fatigue (1 evaluation)
Side effects
Total evaluations
1
Tried for
fatigue (1)
Treatment name(s)

(Deltasone)
Perceived effectiveness
for Susac syndrome (2 evaluations)
Side effects
agitation with irritability weight gain
Total evaluations
2
Tried for
Susac syndrome (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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


Age
Age Proportion # of patients
<20 0
20s 5
30s 8
40s 7
50s 4
60s 3
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1
20-29 years 3
30-39 years 1
40-49 years 0
50-59 years 1
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 10
Female 16

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5
Not Diagnosed 2

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