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 for Dravet's syndrome

Let’s build this page together! When you share what it’s like to have Dravet's syndrome through your profile, those stories and data appear here too.

Got a question about living with Dravet's syndrome? Members in the forum might have the answers.

Compare treatments taken by people with Dravet's syndrome

Let’s build this page together! When you share what it’s like to have Dravet's syndrome through your profile, those stories and data appear here too.

Got a question about living with Dravet's syndrome? Members in the forum might have the answers.

Who has Dravet's syndrome on PatientsLikeMe?

  • 0 new patients joined this month
  • 29 say Dravet's syndrome is their primary condition

Age
Age Proportion # of patients
<20 10
20s 3
30s 3
40s 6
50s 8
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

Distribution of sex

Sex
Sex Proportion # of patients
Male 14
Female 20

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 15
Not Diagnosed 5

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