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Supporting SCN8A 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
47%
of siblings reported being unhappy 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.
Siblings Feel It Too - Depression
35%
of adult siblings reported a history of treatment for clinical depression. 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.
Siblings Feel It Too - Anxiety
79%
of young siblings expressed fear that their sibling might die. 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.
Siblings Feel It Too - Irritability
54%
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.
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Resources for you

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 (originally 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

Immediately access all printed components of the Parents & Caregivers Kit, VIP Sibling Kits, and more!

Link to Request Your Kits

Ongoing Support from the SCN8A Alliance and DEE-P Connections -

COMING SOON!

These materials will likely open up new conversations.

We are looking forward to offering continuing support to help create a safe space for these important discussions.

Webinars on Family Communications

Featuring various experts and families focusing on topics of interest to special needs SCN8A and other DEE families.

Family Sharing Group

A small, personal space to share challenges and success with other parents

By becoming an Alliance Family Partner, we will share updates on these programs and other topics of possible interest. Follow and Like our Facebook page to receive direct updates. 

Links to Some Additional Resources for Siblings

Epilepsy Foundation offers Kids Crew for children of any ability level who have, or want to support, someone with epilepsy.

Contact: Jon Scheinman jscheinman@efa.org

Sam’s Sibs Stick Together – series on and by sibs sponsored by the Autism Science Foundation and Els for Autism  

Contact:  Alicia Halladay at ahalladay@autismsciencefoundation.org

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; info@siblingsupportproject.org

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 include 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:

Parent to Parent USA

Family Voices

Thanks to all the partners we have collaborated with in developing these exciting new resources for rare epilepsy families and siblings.