Dravet's 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 Dravet's syndrome?

Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare disorder caused by a genetic mutation in a protein that regulates electrical activity in the brain. People with SMEI experience almost every type of seizure known.

Common symptoms reported by people with Dravet's 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 Dravet's syndrome

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

(Onfi)
Type
Prescription Drug
How many have tried
1
Tried for
Dravet's syndrome (1)
Treatment name(s)

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

(Felbatol)
Type
Prescription Drug
How many have tried
1
Tried for
Dravet's syndrome (1)
Treatment name(s)

(Trileptal)
Type
Prescription Drug
How many have tried
1
Tried for
Dravet's syndrome (1)

Data from patients with Dravet's syndrome, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with Dravet's syndrome

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

(Onfi)
Perceived effectiveness
for Dravet's syndrome (1 evaluation)
Side effects
drowsiness
Total evaluations
1
Tried for
Dravet's syndrome (1)
Treatment name(s)

(Klonopin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1)
Treatment name(s)

(Felbatol)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
Dravet's syndrome (1)
Treatment name(s)

(Trileptal)
Perceived effectiveness
for Dravet's syndrome (1 evaluation)
Side effects
Total evaluations
1
Tried for
Dravet's syndrome (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with Dravet's syndrome, who reported starting treatments within the last 5 years.
Last updated:

Who has Dravet's syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 11
20s 2
30s 3
40s 6
50s 6
60s 1
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 8
20-29 years 0
30-39 years 1
40-49 years 0
50-59 years 0
60-69 years 0
70+ years 0

Sex

Distribution of sex

59% Female
41% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 14
Not Diagnosed 5

These charts show data from Dravet's syndrome patients who have completed their condition history
Last updated: