Living with LGS: How rare syndrome, severe epilepsy impacts individuals, families

Health

Rochester, N.Y. (WROC) — Rochester city buildings will light up in purple and green on November 1 for national Lennox-Gastaut Syndrome Awareness Day.

Also known as LGS, Lennox-Gastaut Syndrome is a severe form of epilepsy which impacts both individuals and entire families who care for the individual.

Penfield residents Dane and Mary Overfield’s youngest daughter Meghan has LGS.

While the syndrome is rare, the URMC Epilepsy Center sees numerous cases because of the syndrome’s severity. Penfield residents Dane and Mary Overfield’s youngest daughter has LGS, but they said having a nearby resource greatly helps.

“We’re very fortunate to have them in our backyard because we know families that have to travel for that level of care,” said Mary Overfield.

The family has two daughters and when their second, Megan Overfield, was born with LGS, it changed their lives.

“The biggest impact LGS has had on our family is the complete loss of spontaneity that you have in life,” said Mary Overfield. “Everything we do has to be meticulously planned out — we have to know our schedule months in advance. So, if someone says, ‘Hey, do you want to go to dinner next Friday night?’ that’s probably a hard no because we didn’t plan for it, we don’t have care for Megan.”

Dr. Deana Bonno, epileptologist at URMC Epiepsy Center and Megan’s doctor said there isn’t a cure, but there are treatments and therapies which can help.

“Lennox-Gastout Syndrome is a severe childhood epilepsy syndrome that is not common among children, but it’s commonly seen in the epilepsy clinics because these children have severe forms of epilepsy that are very difficult to control,” said Dr. Bonno

In addition to participating in clinical trials, the Overfields also take part in the Lennox-Gastaut Syndrome Foundation which works to build community among families.

“The foundation exists really to make sure nobody else has to walk this journey alone,” said Dr. Tracy Dixon-Salazar, executive director of the LGS Foundation.

“Really to find families and to bring them into the community. We may not have cures right now, but we definitely have an amazing community of help and support.”

The foundation also advocates for research to help future generations with the syndrome and to find a cure.

“The research won’t benefit [Megan], but those who come after her, it would be great to at least control the seizures better,” said Mary Overfield.

A daily challenge the Overfield’s face is what the future looks like. Megan is in her 20s and still requires the care of a newborn – including being carried from her wheelchair to her bed, and always being in eyeshot for seizure precautions.

“What’s difficult as we’re getting older is what’s the next step?” said Dane Overfield. “Megan is an adult-sized person and a lot of physical involvement on our part is needed to care for her.”

But, the Overfield’s say daily challenges haven’t dulled Megan’s light.

“LGS has robbed her of many things, but not her spirit. She is just such a happy kid,” said Mary Overfield.

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