Caregiver and Patient Stories
There is a community of caregivers who understand what it’s like for a loved one to receive a Dravet syndrome diagnosis. Hear about some of those journeys and why these caregivers decided to make the DIACOMITment. Results may vary.
Our Dravet Journeys
DIACOMIT® (stiripentol) helps patients achieve profound seizure reduction so families can celebrate everyday wins. With DIACOMIT, side effects — such as sleepiness, decreased appetite, and agitation — may also occur.
Eliana’s Journey
Eliana, age 2, is a fighter! She had her first seizure at just 2 months old, and unplanned hospital visits consumed her family’s time.
After her Dravet diagnosis in 2021, she started DIACOMIT
as an add-on therapy to clobazam. Since then, Eliana has had fewer prolonged seizures, which has meant fewer
unplanned hospital visits for her and her family.
Julia’s Journey
Julia, age 7, and her parents, Daryl and Duane, are finding ways to celebrate everyday wins.
With DIACOMIT, Julia’s seizures have been reduced substantially. With less frequent seizures, Julia attends
school more regularly, where she has made some great
friends. Daryl and Duane are proud of everything Julia continues to accomplish.
Kendall’s Journey
Kendall, age 18, has been on DIACOMIT for more than 8 years! Kendall became one of the first children in Michigan to start DIACOMIT after it was approved for compassionate use in the U.S.
Her mother, Jill, has continued to see positive results for Kendall over several years. And now that DIACOMIT is
FDA approved, she no longer worries about losing access
to treatment.
The families above have been compensated for their time.
Did you make the DIACOMITment?
If you’d like to share your Dravet diagnosis and DIACOMIT treatment journey with us, please contact us for more information.
Hear From the Experts
Expert physicians discuss why they chose DIACOMIT for some of their patients with Dravet syndrome. Learn how DIACOMIT helped these patients manage their seizures. Some patients may experience side effects, which can include lack of muscle coordination, decreased weight, or decreased muscle tone.
Dr. Wheless
Dr. James Wheless is a professor, chief, and chair in the field of pediatric neurology. His research has been focused on seizure disorders and epilepsy in children and adolescents, including Dravet syndrome.
For Dr. Wheless, DIACOMIT is one of the first
medications he considers after confirming a Dravet
diagnosis, especially for patients experiencing frequent convulsive seizures.
Dr. Sullivan
Dr. Joseph Sullivan is a pediatric neurologist and board-certified in epilepsy. He directs a pediatric epilepsy center and is particularly interested in hard-to-treat epilepsies like
Dravet syndrome.
Dr. Sullivan has been caring for patients with Dravet
syndrome for several years, even before there were FDA-approved medications specifically for Dravet. He has seen
how Dravet-specific treatments can have a positive
impact on patients’ seizure control.
Healthcare providers have been compensated for their time.
Start the Conversation With Your Doctor
Our Caregiver DIACOMIT Discussion Guide includes questions to help you prepare for a conversation about DIACOMIT with your child’s doctor.
What is DIACOMIT?
Learn more about the only FDA-approved antiseizure treatment specifically for Dravet syndrome in children as young as 6 months.*
* 15 lb or more and taking clobazam
Resources for Patients and Caregivers
Visit our Dravet syndrome and DIACOMIT resource library for more support and information.