Dravet Syndrome Awareness Day
By: Kaylee Powell
Dravet Syndrome Awareness Day is celebrated annually on June 23 to educate and raise awareness about the syndrome.
What is Dravet Syndrome?
Named after the pediatric neurosurgeon, Dr. Charlotte Dravet, who discovered the first signs of the syndrome, Dravet syndrome is a rare epilepsy condition that is usually diagnosed around the first year of life. Dravetfoundation.org defines Dravet Syndrome as “Severe Myoclonic Epilepsy of Infancy (SMEI), [Dravet Syndrome] is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. It has an estimated incidence rate of 1:15,700.” Three main types of seizures can occur from Dravet Syndrome, Myoclonic, Toni-clone, and focal.
Epilepsy.com defines the three as follows:
Myoclonic: “Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles… rapidly alternating contraction and relaxation—jerking or twitching—of a muscle. Usually, they don't last more than a second or two.”
Tonic-Clonic: “As implied by the name, they combine the characteristics of tonic and clonic seizures. Tonic means stiffening, and clonic means rhythmical jerking… These seizures generally last 1 to 3 minutes. Afterward, the person may be sleepy, confused, irritable, or depressed.”
Focal: There are three focal seizures.
“Focal to bilateral tonic-clonic, start in a limited area on one side of the brain and spread to involve both sides.”
“When the seizure begins in one side of the brain and the person has no confusion or loss of awareness of their surroundings during it, it is called a focal aware seizure.”
“When the seizure begins in one side of the brain and the person has confusion or a change in their level of awareness during some or all of it, it is called a focal impaired awareness seizure.”
This syndrome also comes with a variety of different symptoms ranging from developmental delays, speech impairments, balance issues, sleeping difficulties and so much more. Due to how complex this disorder is, there are many extensive steps to trying to keep a grasp on this syndrome. This ranges from multiple doctors to many different medical approaches.
The Importance of Dravet Syndrome Awareness Day
This day serves many purposes.
Raise Awareness: it provides a way to raise awareness for this life-changing syndrome. Educating people so they can get diagnoses and get assistance earlier is a large part of this awareness day. Earlier diagnosis leads to better outcomes.
Fundraising, Research, and Advocacy: This day is also a big research and advocacy day. There currently isn’t a cure for Dravet Syndrome so this day also serves as a call to action to remedy that. Many advocacy groups work to research and fund clinical trials for the condition but could benefit from outside research, advocacy, and donations.
Release a Butterfly: June 22 is the annual “Wings for Hope” butterfly release in remembrance of all the people who passed from Dravet Syndrome. The foundation has concluded sales for this year however, you can participate next year by keeping up with dravetfoundation.org.
Building Community: Furthermore, this day serves as a community-building day as it brings those with Dravet Syndrome, their families, and similar communities together to build a better network of those facing the same struggles.
Becoming Involved
If you are looking for ways to be involved in Dravet Syndrome Awareness Day you can participate in a few ways.
Donation: Organizations like dravetfoundation.org are always accepting donations. These donations will be allocated to providing resources for families and continuing research on the syndrome.
Wear Purple: Purple is the official color for Dravet syndrome awareness, by wearing purple on June 23 you will be able to show awareness for the syndrome and possibly educate those who don’t already know about the syndrome.
Find Events Near You: Finding an in-person or virtual event to attend to understand more about the condition is a great way to learn some more first-hand information about it as well as how it impacts individuals and families. There are also online seminars and infographics that you can post on your social media to spread more information.
Dravet Syndrome Awareness Day is an opportunity to highlight this rare and life-changing condition. By celebrating this day we’re not only bringing awareness to the condition but also providing a supportive place to build a strong and informed community.
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