Did you know that June is considered Dravet Syndrome Awareness Month? Every year, people within the Dravet syndrome community come together to amplify stories, raise awareness, and encourage the general public to increase their education and understanding of this rare genetic condition. This year’s theme is Community. Research. Progress. Hopefully, as more awareness is raised, we can move forward with better treatments and care for this community, improve the diagnostic process, and combat the isolation that often comes hand-in-hand with a rare disease diagnosis.
A Brief Overview of Dravet Syndrome
Dravet syndrome is a rare epileptic encephalopathy that causes severe and prolonged seizures within the first year of a child’s life. Seizures may occur on one side of the body, be triggered by warm water (in infants), or last for longer than 10 minutes. Since Dravet syndrome is a lifelong condition, those affected will experience myoclonic and partial seizures, atypical absence seizures, or even status epilepticus (which is considered a medical emergency) throughout their lives. Additional characteristics and symptoms include development delays, speech impairments, sleep disturbances, behavioral disorders, lack of coordination, and low muscle tone.
There isn’t a cure for Dravet syndrome. The condition can be managed with Epidiolex, Diacomet, and Fintepla—all approved to stop seizures in children ages 2+—as well as vagal nerve stimulators, ketogenic diet, and other anti-seizure medications. Sodium channel blockers should not be used to treat Dravet syndrome.
How to Help Raise Awareness
If you’d like to join in during Dravet Syndrome Awareness Month, but don’t know where to start, don’t fret! The Dravet Syndrome Foundation put together a list of ways that you can get involved (and we even added some ourselves)!
First, you can participate in fundraising events like Dye it for Dravet; after registering, you dye your hair, mustache, or beard to show that you’re serious about finding a cure! If you’re not sold on dyeing your hair, you can still contribute by donating to the Dravet Syndrome Foundation.
If someone you loved has passed away from Dravet syndrome, you can submit their name for inclusion on the Dravet Syndrome Foundation’s Virtual Remembrance Wall on June 15, which marks the 3rd Annual Dravet Remembrance Day. During this day, we honor those who were lost.
You can also raise awareness in your communities or online during International Dravet Syndrome Awareness Day on June 23. Use the hashtag #DravetAwarenessDay and #CureDravet on social media to share your story—or find others’ stories. Like, comment, and retweet on videos and posts from the Dravet Syndrome Foundation, patients, and advocates.
Finally, consider reaching out to your local media asking them to do a piece on, or at least mention, Dravet Syndrome Awareness Day. You can also hold an event at your school or workplace—or even come up with unique ways to raise awareness in your community.
