By Amber Kaiser

Did you know there are not only different types of seizures, but also different kinds of seizure syndromes? Seizure syndromes are classified by certain characteristics that occur together like the cause of the seizure, type of seizure, genetic information, the parts of the brain that are affected and more. 

There are many different types of seizure syndromes and in this article, I’m giving light to Dravet syndrome (DS). I’ve now met a few people whose children were born with DS and I’ve been interested in learning more and helping spread awareness after hearing their stories. Like many people with rare diseases, self-education and finding ways to connect with other people who have the same conditions and challenges can make a huge difference in quality of life, feeling understood and finding the right doctors and health care needed much faster than trying to figure it out on your own.

What is Dravet syndrome?

Dravet syndrome seizures or epilepsy begins in infancy or early childhood and is an intractable form of genetic epilepsy, or lifelong condition. The Dravet Syndrome Foundation (DSF) was founded in 2009 by a group of parents with a mission to “aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.” They say that “Dravet syndrome is a rare disease, with an estimated incidence rate of 1: 15,700, with the majority of patients carrying a mutation in the sodium channel gene SCN1A.” Currently, there is not a Dravet syndrome cure.

Dravet syndrome symptoms can be mild while for other people they can be more severe. The National Institute of Neurological Disorders and Stroke also states, “Children with the disorder typically have normal development in the first few years of life. As seizures increase, the pace of acquiring skills slows and children start to lag in development behind their peers. Other symptoms can begin throughout childhood with changes in eating, appetite, balance, and a crouched gait (walking).” A lot is still needed to be researched about Dravet syndrome, and they encourage families to participate in clinical trials.

The National Organization for Rare Disorders has some really helpful information explaining in detail how Dravet syndrome develops in the brain stating: 

“DS is thought to be at the severe end of a spectrum of disorders associated with changes (mutations) in genes for the sodium ion channel. The sodium ion channel is a gated pore-like structure in the cell membrane that regulates the movement of sodium ions into and out of the cell, helping to propagate electrical signals along neurons. Sodium ion channels are critical components of any tissue requiring electrical signals including the brain and heart. More than 80% of patients with Dravet syndrome have a mutation in the SCN1A gene (Rosander 2015), but not all SCN1A mutations lead to Dravet syndrome. DS is considered an epileptic encephalopathy, or disorder of the brain due to seizures. In addition, it is considered a “channelopathy” because the effects of the mutation on the sodium channel appear to contribute to the disorder independently of the seizures.” 

Tragically, SUDEP (Sudden Unexpected Death in Epilepsy) and SE (Status Epilepticus) are the first and second most common causes of death for people with DS.

Where to get help

The Dravet Syndrome Foundation likely provides some of the best resources available for families. The treatment of Dravet syndrome is lifelong and they have caregiver resources and support. If your child was newly diagnosed, read these support messages and advice. DSF can also help you find a doctor, learn about the Dravet syndrome medications and Dravet syndrome treatment guidelines, join a bereavement support group and provide you with many other resources.

Dravet syndrome stories

Are you interested in learning about any others who have gone through or are currently going through your own experience of living with a child who has Dravet syndrome? Learn about these brave children and hear their stories and advice.

Connect with the Dravet syndrome community

DSF also provides many ways you can get involved in the Dravet syndrome support group community and connect with others who understand your experiences and challenges. They have live events, virtual events as well as volunteering and giving opportunities. June is also now Dravet Syndrome Awareness Month in the U.S. with the International Dravet Syndrome Awareness Day on June 23rd and an annual Dravet Remembrance Day on June 15th. Learn more about these days and how you can get involved. Even if you aren’t a social person, it may really help to communicate with other people who understand what you are going through so I hope you find something that is the right fit for you!