Lennox-Gastaut Syndrome – Santa Barbara News-Press
Santa Barbara resident takes care of her son, who has LGS, and works with a foundation
Long before COVID-19 ravaged the world, Santa Barbara resident Jen Griffin knew what isolation felt like.
In fact, anyone with the rare condition of Lennox-Gastaut syndrome, or any caregiver of someone with this condition, knows the loneliness of isolation.
Ms Griffin is not only a carer for her 20-year-old son, Theo, who has LSG, but she is also the director of family support at the Lennox-Gastaut Syndrome Foundation.
LGS is a “severe epilepsy that develops in infancy and is characterized by more than one type of seizure… In my son’s case, he started his classic LGS story kind of infantile spasms at 3 years,” Ms. Griffin told The News. -Hurry.
“Nobody is born with LGS,” she continued. “Some have a genetic cause or mutation.
“Some have a birth injury or a brain injury. There are some who have childhood cancer and after chemotherapy started having seizures,” she said. “Genetic mutations account for a large percentage of seizures. The cause is unknown for 10% of seizures.
“A lot of people are finally finding out why their children have seizures. A large percentage is down to genetics, which is revealed by genetic testing,” Ms Griffin explained. “With my son, there is no known cause. Everything appears structurally normal in his MRI. People with LGS can experience hundreds of seizures a day.”
The LGS Foundation was recently one of 30 advocacy organizations to receive a grant from the inaugural #RAREis Global Advocate Grant from Horizon Therapeutics, a new program designed to support the rare disease community by offering $5 grants. $000 to US and global patient advocacy groups working to advance, educate and meet community needs. These funds will be used to support the training of the LGS Foundation for their ambassadors.
The LGS Foundation has nearly 45 ambassadors across the country, who help bring new families into the organization. With this grant, the LGS Foundation plans to bring all of its Ambassadors together in August for critical tools and resource training and strategy development.
“LGS Foundation Ambassadors and Patient Navigators gathered in Orlando, Florida on August 13-14 to focus on building skills that will help strengthen and empower the caregiver community,” said Ms. Griffin. . “During this training, they discussed strategies for engaging with new families and sharing resources and information with others who may feel lonely and isolated in their loved one’s LGS journey.
“LGS Foundation Ambassadors are volunteers who do not necessarily come to this role with any experience supporting families in crisis,” she said. “With this in mind, an expert was brought in to provide tools for self-care, finding healthy balance, and setting boundaries so that these caring individuals don’t become overwhelmed and drained in their desire to give back.
“At the end of the meeting, the group was encouraged to lean on each other as we move forward to build a stronger, more engaged community that has access to support and resources, and never feels the devastation and isolation that LGS diagnosis so often. brings,” Ms. Griffin told News-Press.
People with LGS often suffer from gastrointestinal problems, constipation, and diarrhea. Some are tube-fed and most don’t sleep. Children often wake up throughout the night.
“Theo is fine now as he has less than five seizures a day. That would be called an improvement. My son needs help with ADLs (Activities of Daily Living),” said Mrs. Griffin.
People with LGS have a higher than average death rate. They cannot be left alone. Head injuries are the leading cause of death. Another leading cause of death is something called SUDEP (sudden unexpected death in epilepsy).
“Theo is non-verbal, muscular and strong, with a high pain tolerance,” Ms Griffin said. “I’ve looked down and seen broken bones before. Once I sent him to school and the teacher called me and said he came to school with a broken finger. Our children wear helmets with face masks.
For those who function better and can walk and talk, there are behavioral issues including self-harm or hurting others.
Ms Griffin, a single mother sharing custody with Theo’s father, also pointed out that the condition can have a real impact on family, siblings and carers.
“Theo is a two-person job, not a one-person job. I manage but I have to be super careful. Theo is 20 years old, 5ft 10in and 160lbs, while I am 5ft 4in and 130lbs,” she said.
Caregivers can experience chronic traumatic stress.
“Theo may be at his father’s house, and I may sit thinking I heard a seizure,” Ms Griffin said. “You are always primed and ready for the next crisis. When your child has high needs, parents think self-care is selfish. But what I need is to make sure I’m okay, so I can continue to take care of my son.
Ms. Griffin spoke about her work with the LGS Foundation.
“When I started with the foundation, it’s like any other nonprofit role, you wear many hats and carve out the role as you go,” she said. “I communicate with industry supporters and am the first point of contact for families who contact us. All telephone and e-mail messages come to me in the form of online forms.
“I will always do an introduction to this family. I send an email with a website, introduce myself and offer to connect them with an ambassador,” Ms Griffin said.
“I hope the ambassador is someone in their state or a neighboring state. Because we are a rare disease, we will always have greater needs than our funds can fulfill.
“People think maybe people with disabilities can get a job doing groceries or walking a dog. Theo can’t work at all. He needs constant care,” she said.
But she added: “I hate it when people look at Theo and our lives and feel sorry for us. I want Theo to be happy, I want people to care about him, not just him. It’s really sad. that people with severe disabilities are considered objects of pity.
But Ms Griffin also saw compassion.
“I’m not hiding. I take it out into the community,” she said. “He fell asleep and had three seizures in 45 minutes, and (there were a large) number of people who came to offer help.
“I saw the best of humanity in the way they interacted with Theo.”
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