The impact of Dravet syndrome on families
When a family member has Dravet syndrome, everyone is affected. Each of you will experience life's joys, but also challenges. The caregivers in our community offer words of wisdom: Take it one day at a time, and remember that you can and will get through this.
When you have a child that has complex medical needs, it changes you. Your priorities change, and the way you view the world changes. That's what happened with my family. Rosie became the center of our world, and I wouldn't have it any other way.
—Melanie, mom of Rosie, age 3
Learn about common challenges
that families face
When a loved one has Dravet syndrome, family members often make accommodations and changes in their daily life. These changes can include anything from taking time off from work, to having less time to themselves. By learning about the challenges others have experienced, you may feel better prepared.
Download key facts about the impact of Dravet
The emotional impact of Dravet syndrome on siblings
People who have a sibling with Dravet syndrome learn the importance of being patient and compassionate with others at an early age. They often show a great amount of strength on the outside but can at times be struggling on the inside. A study showed that they also often experience high levels of stress, anxious feelings, and fear. Some common challenges siblings face during their day-to-day lives include:
Feeling Unhappy
At least 47% of siblings reported feelings of unhappiness
Anxiety
As much as 58% of siblings showed possible anxiety symptoms
Fear
Many of those surveyed, including 79% of siblings aged 9-12, expressed fear that their sibling may pass away
The Siblings Voices Study was created to measure the emotional impact of growing up with a sibling with certain types of epilepsy like Dravet syndrome.
Learn about the Siblings Voices Study
Mia's diagnosis has impacted [her sister] Hannah. [Hannah] has a lot more empathy for others and looks out for people that have disabilities or aren't treated right. She's just got a kinder heart.
—Erin, mom of Mia and Hannah, ages 16 and 14
Connect with families like yours
It’s important to remember you aren’t alone in this journey; other families are going through similar struggles. The Dravet Syndrome Foundation (DSF) Family Network offers a community of support for the parents and caregivers of those with Dravet syndrome.
Join the DSF Family Network
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