Supporting Rare Epilepsy Families and Siblings
Siblings are so often the unsung heroes of rare epilepsy families.
Let’s make them feel like the stars that they are!
All rare epilepsy families face challenges—it’s a reality of living with a rare seizure disorder. You know better than anyone that caring for a child with a rare epilepsy requires considerable energy, time, and flexibility. And that has an impact on every member of the family—including your VIP sibling. As helpful and involved as they may be with their brother or sister, VIP siblings have needs and concerns of their own. Sometimes, they feel alone.
Siblings Feel It Too - Unhappiness
of siblings reported being unhappy sometimes or a lot of the time.
Siblings Feel It Too - Depression
of adult siblings reported a history of treatment for clinical depression.
Siblings Feel It Too - Anxiety
of young siblings expressed fear that their sibling might die.
Siblings Feel It Too - Irritability
of young siblings reported feeling irritable or grumpy sometimes or a lot of the time.
Many siblings say they have learned to feel compassion and are more understanding of others who are disabled. Other findings showed that siblings can often feel stressed, anxious, or fearful.*
* A recent study called the Siblings Voices Survey looked at the emotional impact of growing up with a brother or sister with severe epilepsy.
How We Can Help
We have been honored to have collaborated over the past year with Zogenix, sponsors of important research on rare epilepsy siblings. Working alongside nine other patient group leaders, we have adapted the research and tools developed for the Dravet community for siblings and families of all rare epilepsies.
We’re delighted to offer you these unique resources to inform and encourage your families and your amazing VIP siblings.
Parents & Caregivers Kit
Designed by the rare epilepsy community to help parents and caregivers support their VIP siblings.
VIP Sibling Kits
Available in two age-appropriate versions, these kits are designed especially for VIP siblings to help them cope and celebrate how important they are.
Tools & Resources
Access at your fingertips to all printed components of the Parents & Caregivers Kit, VIP Sibling Kits, and more!
DEE-P Connections Support
These materials will likely open up new conversations.
DEE-P is offering continuing support to help create a safe space for these important discussions.
Quarterly Webinars on Family Communications
Featuring various experts and families focusing on topics of interest to special needs DEE families.
Monthly Family Sharing Group
A small, personal space to share challenges and success with other parents.
Epilepsy Foundation offers Kids Crew for children of any ability level who have, or want to support, someone with epilepsy; Contact: Jon Scheinman email@example.com
Sam’s Sibs Stick Together – series on and by sibs sponsored by the Autism Science Foundation and Els for Autism
Contact: Alicia Halladay at firstname.lastname@example.org
Hope for HIE has a super sibs group where families can set up their same age siblings in penpals, refers people to Sibling Support Project
Contact: Betsy Pilon, Betsy@hopeforHIE.org, 248-703-6914
The Sibling Support Project is a national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental, health, and mental health needs. Initiatives include: Sibshops events, Online Communities for Brothers and Sisters networking groups for siblings and other family members, Publications, and Workshops and Training Contact: | (425) 362-6421 | Emily Holl, Director; email@example.com
Numerous Early Start Family Resource Centers and Parent Training & Information Centers (PCITs), (funded by the federal Individuals w/Disabilities Education Act - IDEA) in each state provide parent-to-parent support including sibling support as well. The organization in each state may be affiliated with Parent-to-Parent USA and/or Family Voices.
Program links to identify state affiliates:
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