Our mental health and emotional well-being affect how we think, feel, and act, including how we deal with stress. As a caregiver to a child with Dravet syndrome (DS), a rare epilepsy syndrome, I understand the importance of prioritizing mental health, but I don’t always advocate for myself in the same way I do for others. For example, while I frequently encourage friends and colleagues to take a day off to disconnect and invest in their mental health, I don’t always follow my own advice, and can often end up burnt out and exhausted.

While having children is one of the greatest sources of joy we can experience, having a child with complex medical needs is also a great challenge. It has taken me many years filled with constant worry, sleepless nights, and stress to understand that prioritizing my own mental health ensures I can be the best possible caregiver and advocate for my son, Elliot.

Elliot was born in February of 2000, after a healthy and uneventful pregnancy. At the age of 6 months, he had his first seizure, which was over 90 minutes in length. It was difficult to see my child, who was once growing and developing on track, suddenly battling frequent and prolonged seizures and starting to fall behind his peers. After a challenging journey of unanswered questions and meeting with experts, at age 4, Elliot was diagnosed with DS.

DS is a rare (~1:15,700)¹ form of intractable epilepsy (seizures that can't be completely controlled by medicines) that begins in infancy and proceeds with accumulating morbidity throughout a person’s lifetime. It is a Developmental and Epileptic Encephalopathy, or DEE, part of a group of severe epilepsies with frequent and difficult-to-treat seizures and significant developmental delays. Seizures in DS usually start during the first 2-15 months of life,¹ often in the presence of fever or warm temperatures. Beyond this, people with DS face a 15%-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections.¹

In addition to the physical symptoms, patients experience a constellation of other challenges, including those that directly impact mental health. For patients with DS, autistic-like-traits, attention-deficit disorder (ADD) and attention-deficit/hyperactivity disorder (ADHD) are common,² and depression and anxiety are prevalent among adolescents and teens. Coupled with challenges that may present themselves in social settings, DS is not only wearing on the patient, but on the caregiver and loved ones as well.²

Through both my lived experience as well as my work at the Dravet Syndrome Foundation (DSF), I’ve seen how DS affects all family members. It’s crucial to understand the importance of the patient–family experience and their unmet needs. We must show up, listen to families, and hear their stories. In 2018, our partner UCB compiled the Siblings Voices Survey to assess how children adapt to growing up with siblings with DEE, in partnership with the DSF and Lennox-Gastaut Syndrome Foundation (LGSF) communities. Over the course of the survey, 128 parents and 120 siblings responded to one of four online age and role-specific surveys. Researchers learned that adults and teens felt overly responsible for their sibling with DEE, with 82% of teen siblings reported DEE as substantially affecting their home life.³ In some cases, this overwhelming feeling of worry and responsibility may have contributed to symptoms of anxiety or depression—35% of adult siblings reported they were currently or had been treated in the past for clinical depression³. Given this, it’s great that we have resources, grounded in research and insights from the community, like the VIP Siblings Program and kit cocreated by the rare epilepsy community and companies such as UCB to help support during difficult times.

We knew there was a significant unmet need with the experiences and emotions of well siblings in rare epilepsy families. The VIP Sibling Project was a collaboration with the DSF and LGSF communities and others to conduct the Sibling Voices Survey, a research study designed to evaluate the impact of growing up with a sibling who has a rare epilepsy. The survey’s findings led to poster presentations to the clinician and scientific community and to its 2020 publication in Epilepsy & Behavior. The Sibling Voices Survey validated what we learned from listening to families. 

Now through the work of companies like UCB, we have platforms to share our research results, raise awareness on the challenges siblings face, and—with the help of the community and healthcare professionals—provide practical guidance to parents and caregivers to help them support their VIP siblings, to remind them how important and loved they are. Through my experiences and those of others, I have learned there are many highs and lows to being a caregiver to a child, and now an adult, with DS, and how it also affects everyone around us. The two biggest lessons for me have been how important it is to find and connect with your community, and that you must make yourself a priority, too. There is a power in sharing your experiences and learning from one another. Thanks to my support system found within DSF and the caregivers I have connected with over the years, I’ve been able to learn what it means to care for both my son and myself. 

I appreciate that DSF has had the opportunity to collaborate with partners like UCB to create impactful educational resources that have been helpful to DSF and other rare epilepsy communities in supporting families during this complex journey. Providing patients and their families with information on their condition can help them make informed decisions about their treatment and care.

I can only hope that in my time as Executive Director for DSF, I can continue to help caregivers as they navigate this path and help them to find the tools and resources that allow them to serve as the best possible caregivers for their loved ones living with DS. 

If you or anyone you know is in a mental health crisis, please call 988.

References:

1. “What is Dravet Syndrome?” Dravet Syndrome Foundation. https://dravetfoundation.org/what-is-dravet-syndrome/ (Accessed March 29, 2023).
2.  “Comorbidities in Dravet Syndrome.” Dravet Syndrome Foundation. https://dravetfoundation.org/what-is-dravet-syndrome/comorbidities/#:~:text=Autistic%2Dlike%20traits%2C%20Attention%20Deficit,are%20common%20in%20Dravet%20syndrome (Accessed March 9, 2023).
3.  Bailey, L., et. Al. (2020). Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies. Epilepsy & Behavior. doi: https://doi.org/10.1016/j.yebeh.2020.107377

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