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Epilepsy support group spreads understanding
Sunday, November 9, 2008 6:31 AM EST
By Pamela McLoughlin, Register Staff
MILFORD — Jaws still drop in exasperation when Robert A. Fiore tells the story of how a woman he once dated for three months dropped out of his life inexplicably the day after he told her he had epilepsy.
Eventually he met another woman he liked and when they got close, he told her he had epilepsy and she said, “Tell me more.”
“That’s the woman I married,” said Fiore, of Milford. “The stigma has been there for centuries.”
Fiore, diagnosed at 9 months old with epilepsy in the mid-1950s, is one of 20 or so people who gather on the second Monday of each month at Milford Hospital for an epilepsy support group, one of only a few in the state.
Epilepsy is a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain and can cause seizures.
Dr. Robert Duckrow, associate professor of neurobiology and neurosurgery at Yale University School of Medicine, staff member at Yale-New Haven Hospital and member of the Epilepsy Foundation Advisory Board, said the support group is a great platform for expressing feelings and giving a voice to those with epilepsy.
“There is a tremendous social stigma so they face a lot of barriers,” Duckrow said.
Patrick Danis, program coordinator for the Epilepsy Foundation of Connecticut, said more than 50 million people worldwide have epilepsy, about 3 million in the United States and 60,000 in Connecticut.
He said many cultures attached a stigma to epilepsy because of the seizures which can be sudden and powerful, causing the suffererer to maybe lose bodily control or consciousness. The old thinking is that people with the condition are to be feared, he said.
Aside from the Milford support group, there are groups in Bethel and Middletown. The hope is to start more support groups soon, including ones for teenagers or parents of children with epilepsy.
“It’s one of those conditions people don’t want to talk about,” Danis said.
So a support group is so important, Danis said.
“Everyone has a different story, but they’re able to help each other through good and bad,” he said.
Peg Tehan of Clinton, a trained social worker, started the support group in 2000 and remains the facilitator.
“I needed it,” she said. “I kept questioning people in the medical field. To me it was like who do we talk to? Who would listen?”
The answer was: others with epilepsy.
She had her first seizure — a grand mal — at age 22 after graduating from college. Her sister and cousin were with her at the time, and when she awoke, “I was so relaxed, I thought I was in heaven,” Tehan said.
Tehan is one of the lucky ones whose seizures disappeared with surgery, but all these years later, “to me it’s sheer joy to have people relating to each and sharing and negatives, other any challenges.”
Duckrow said the seizures resulting from epilepsy come in many varieties — subtle, violent and everything in between — can hit any age group, can become transient or disappear. He said the highest incidence is in children and older people. Medication controls the condition for many. Surgery is an option for some.
The list of famous people with epilepsy is long, including Chief Justice of the United States John Roberts, musician Neil Young, and New York Jets lineman Alan Faneca.
Debbie Chadbourne of Orange was 36, an intensive care unit nurse and teacher at two universities when her first seizure came out of nowhere driving home from work. The car crashed and she lived, but life has never been the same because she had to leave work, can’t drive and can’t be alone.
Chadbourne, who sprinkles lots of humor in talk about her epilepsy has seen good come out of it — like there’s more time to spend at home with her kids — and she can take the time to do lunch, have coffee.
But she’s often grappled with the frustration of remembering “who I was,” — in terms of career and independence.
“I never expected to be in the feminine products aisle with my father-in-law,” she quips of needing accompaniment to the store. “But I can either be mortified and go out or sit in my house.”
Chadbourne, who has seizures in an area of the brain responsible for memory and who isn’t a candidate for surgery, loves having a place to vent. It’s also a place where people can exchange information on medication and medical developments.
“Here we connect,” said Chadbourne. “I can sit here and make jokes about the top 10 places I’ve peed in my pants.”
Dwayne Paul, father of Shelby Paul, 18, of Milford, who was diagnosed at age 9, is part of the group so he can get insight to help his daughter cope with epilepsy at her delicate age.
Some people get a metallic taste in their mouth before a seizure, some a headache, some light headed and others have no warning.
Aprile Johnson of West Haven smells chlorine before a seizure. Johnson’s children know her left side becomes paralyzed and they know how to react.
Her epilepsy developed after surgery for a brain tumor at age 21. Now 35, she had the surgery and a week later had a stroke that left her unable to walk. But she was so determined to walk down the wedding aisle that September without a walker, Johnson went into physical therapy overdrive and to doctors’ amazement, made her wish come true.
Johnson was told that because of the radiation treatments she received that she’d never have children. Today, she has four children.
She notes that one of her sons recently was praised by a teacher for reaching out to a handicapped student so naturally that Johnson figures her son developed his sensitive ways because he’s used to dealing with her condition.
“I think my four kids were put here to do something wonderful,” she said.
URL: http://www.nhregister.com/articles/2008/11/09/news/milford/ctepilepsy.prt
© 2008 nhregister.com, a Journal Register Property
NEW TEEN SUPPORT GROUP
If you are interested/ or your child is interested in a support group for teens, please email Patrick for more details.
Backstage with Amy Lee and Evanescence
(Back Row: John LeCompt (Guitar, Vocals), Rocky Gray (Drums), Tim McCord (Bass, Guitar), Charlie Nash, Amy Lee (Vocals), Dwayne Paul, and Terry Balsamo (Guitar). Front Row: Elizabeth Nash, Shelby Paul, and Andrew Nash.)
Epilepsy Awareness Bracelets
The Epilepsy Foundation of Connecticut is excited to present the Epilepsy Awareness Bracelet. Purchase a pack of 10 to give to friends and family.
Please send checks payable to the Epilepsy Foundation of Connecticut to:
Epilepsy Foundation of Connecticut
386 Main Street
Middletown, Connecticut 06457
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