New Program Supports Siblings of Rare Epilepsy Patients

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by Mary Chapman |

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Siblings of children with Dravet syndrome often grow up “in an environment permeated by stress, anxiety, and fear for their loved one’s well-being,” according to the biopharmaceutical company Zogenix. Now, a new online resource is available to help support the brothers and sisters of patients with severe rare epilepsies.

VIP Siblings, offering a variety of tools and resources for children and adolescents, was created as part of a collaboration between Zogenix and 10 U.S. advocacy groups. It seeks to celebrate and enhance support for the sisters and brothers of epilepsy patients.

“For families living with a loved one who has a rare epilepsy, the siblings are truly the unsung heroes. So often they’re asked to make last-minute changes to their plans or take a back seat to their sibling’s seizures,” Tracy Dixon-Salazar, PhD, executive director of the Lennox-Gastaut Syndrome Foundation, one of the organizations that helped create the website and content, said in a press release.

“We are so proud to work across organizations to recognize these champions and express gratitude for the amazing human beings they are,” Dixon-Salazar said.

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For rare epilepsy families, the website offers three support kits that are based on research, expertise, and community input: one each for parents and caregivers, siblings ages 4 to 10, and brothers and sisters between ages 11 and 18. VIP Siblings also offers tools and resources such as a roster of patient organizations.

The goal is to help parents better recognize and deal with indications of sibling stress, while offering youngsters ways to help themselves to express their feelings and to realize that they’re not alone.

Rare epilepsies are lifelong conditions that begin early in life and are marked by frequent and unpredictable seizures, developmental delays, and in some cases, a heightened risk of early death. An estimated 50 million people worldwide have epilepsy, according to the World Health Organization, making seizure disorders among the most common neurological diseases globally.

Dravet, a rare disorder, is characterized by seizures that last 5–30 minutes, or longer, and are difficult to control with anti-epilepsy medications.

Consequently, the families of diagnosed children — including brothers and sisters — may grow up in a milieu filled with stress and anxiety, and concern for their loved one’s health.

A recent study called the Siblings Voices Survey, authored in part by Dixon-Salazar, examined the emotional impact of growing up with a brother or sister with severe epilepsy. That survey helped inform the creation of VIP Siblings.

In the survey, 47%–62% of siblings reported feeling unhappy sometimes or a lot of the time — with “more symptoms of depressed mood … than their parents perceived them feeling,” the project’s researchers wrote.

More than a third of adult siblings (35%) said they’d been treated for clinical depression. In addition, 79% of young siblings expressed fear that their brother or sister with severe epilepsy might die.

Such findings led Zogenix, which developed Fintepla (fenfluramine), an add-on treatment for Dravet, to team up with advocacy organizations to create the new support program.

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In addition to the Dravet Foundation, the partner organizations include DEE-P Connections, the Dup15q Alliance, the Doose Syndrome Epilepsy Alliance, the International Foundation for CDKL5 Research, and the International SCN8A Alliance. Other partners are the LGS Foundation, SLC6A1 Connect, the PCDH19 Alliance, and the TSC Alliance.

“We are honored to have worked with these dedicated, inspiring organizations to help siblings feel heard and supported, directly and through their support circles,” said Laurie Bailey, associate director of medical affairs at Zogenix.

The resources offered by VIP Siblings include educational materials and emergency planning resources for parents and caregivers, as well as journals and other tools for siblings. Included are “positive messages and words of encouragement from adult siblings in the rare-epilepsy community,” Bailey said.

“We look forward to continuing our partnerships with these essential organizations,” she added.

Except for a secured section for siblings, all downloadable materials from the VIP Sibling website are accessible to the public. The advocacy organizations will have a limited quantity of printed materials for parents and caregivers, as well as sibling kits, available for members.

In addition to using the resources, families are encouraged to speak with a healthcare professional about ways to support the siblings of a child with Dravet or other rare epilepsy.