Sibling perspectives: Learning from a brother or sister with a rare epilepsy
(BPT) - There are many different types of epilepsies (the fourth most common neurological disorder in the U.S.); but rare forms of the disease can be especially debilitating and disruptive.
These include infant- and childhood-onset developmental epileptic encephalopathies (DEEs, more simply called “rare epilepsies”) characterized by unpredictable and often prolonged seizures, frequent medical emergencies and hospitalizations, lifelong cognitive and other developmental delays, and, in some cases, a higher risk of premature death. These rare epilepsies occur in a small number of people, but their impact extends to the entire family who often serve as primary caregivers and who live with around-the-clock worry for the well-being of their loved one with the disease.
As a result, even in the most resilient and loving families, siblings of children with severe rare epilepsies can grow up in an environment permeated by stress, anxiety and fear. Their own schedules and activities are often disrupted, and they may feel jealous and alone due to the constant, necessary attention placed on the sibling with the disease.
“For families living with a loved one who has a rare epilepsy, the siblings are truly the unsung heroes,” said Tracy Dixon-Salazar, Ph.D, Executive Director of the LGS Foundation. “So often they’re asked to make last-minute changes to their plans or take a back seat to their sibling’s seizures.”
Grace A., 24, is a big sister to 19-year-old Theo. Theo has a rare form of epilepsy called Lennox-Gastaut syndrome (LGS) that started when he was a baby. As a child, he was having approximately 50-100 seizures a day. Grace still remembers the fear and isolation she often felt as a youngster helping to care for Theo. Today, as an adult remembering this time, she notes, “Growing up with a sibling with a rare epilepsy is very complex because you want to do everything in your power to help them. You want to ’fix’ things, but you also have to learn that there are many things you can’t control and you shouldn’t feel guilty about living your own life and having your own dreams.”
Grace, like many of the siblings of those living with rare epilepsies, shows a maturity beyond her years and a deep connection to and compassion for the special needs community. She has learned so much from her brother Theo, and it has not only made her a more compassionate and patient person it’s something she sees as a gift, rather than a hardship. “I get more from having Theo as a brother than I give.”
Resources for families living with these types of rare epilepsies can be scarce and those to help siblings cope even scarcer. However, armed with firsthand knowledge of the challenges faced by families and siblings of those living with a rare epilepsy, ten patient advocacy groups — Dravet Syndrome Foundation, SLC6A1 Connect, International Foundation for CDKL5 Research, Dup15q Alliance, Doose Syndrome Epilepsy Alliance, LGS Foundation, PCDH19 Alliance, DEE-P Connections, TSC Alliance and International SCN8A Alliance — partnered with other experts in the field and with a rare disease therapy company called Zogenix to create new educational and support resources.
Called VIP Siblings, these resources are available for parents, teens and children of families impacted by rare epilepsies. They include educational materials and emergency planning resources for parents and caregivers, as well as journals, self-expression tools and positive messages of hope and support for the siblings. These are available online (www.Vipsibling.com, including a secure section for adolescents) and the above advocacy groups will also distribute a limited number of packaged kits, specially tailored for both younger and older siblings and parents, to their members.
"It's hard to convey the continuous (as opposed to ‘post’) traumatic stress disorder that so many families with medically fragile children live with. While so often the siblings in these families are loving, devoted and mature beyond their years, we have to remember they too are affected by the trauma and uncertainty of a sibling where life and death crises and interventions may occur with no warning,” said Gabi Conecker, founder and president of the International SCN8A Alliance.
“These carefully designed materials are sure to have a lasting impact, reminding these VIP siblings how special and appreciated they are — and provide them with a truly safe space to experience and share the wide mix of feelings this unique life with severe rare epilepsies presents."
Growing up, Grace never had anyone she could talk to who could relate to what she was going through, but she wished she did. She is enthusiastic about the new sibling resources and how the tools will help siblings cope with and communicate their feelings.
In addition to using the resources provided, families are encouraged to speak to a healthcare professional about ways to identify signs of stress and support their siblings of a child living with a DEE. Visit www.VIPsibling.com to learn more.