Parents of children with epilepsy group being formed in Berkshires
Joellen Catelotti was filled with questions about the epilepsy her 12-year-old daughter Cameryn has.
The Dalton resident wanted to know how others with epilepsy fared at making friends? What would her life be like? Would her daughter, who has refractory epilepsy, meaning medication doesn't completely stop seizures, have her life cut short?
Looking for answers beyond the scope of her doctor, Catelotti attended a newly formed support group on March 16 for parents of children who have epilepsy. The meeting was coordinated by the Epilepsy Foundation and hosted at Berkshire Community College.
"There haven't been any epilepsy support groups until this came to fruition," Catelotti said. Parents used to have to drive to Springfield.
The next meeting will be May 18 from 10 a.m. to noon at BCC. The meetings are solely for parents of children with epilepsy.
Nancy Quetti, a board member with the regional chapter of the Epilepsy Foundation and the mother of a child with epilepsy, said the goal is to have monthly meetings.
Epilepsy is a result of abnormal electrical activity in the brain that can cause recurring seizures. The seizures can lead to involuntary body movements, sensations, awareness or behavior.
According to the Centers for Disease Control and Prevention, epilepsy is more prevalent among children and older adults. An estimated 2 million people in the United States have it. Most live a full life, but there are rare instances of sudden death or of seizures leading to fatal accidents.
Prior to joining the new support group, Catelotti said she used to socialize with parents of children with Down Syndrome.
"They are dealing with their own issues, but they also understand I have my own," Catelotti said.
With epilepsy, program coordinator Susan Welby of the regional Epilepsy Foundation said finding the right medication can be complicated because the effects vary from patient to patient. Through the support group, parents can describe the side effects of medication and verify information they find online, she said.
Welby attended the first meeting at BCC on March 16 and said she will accept e-mails from people who want to be involved in order to ensure confidentiality.
"[Support groups] exist because parents need to share knowledge and experiences and they are not alone being affected by someone with a seizure," Welby said.
The meeting was fruitful for Catelotti, who said she might have found a new friend for her daughter after talking to a parent with a 12-year-old.
Friends can be hard-won for people with epilepsy because they might not know how to react to seizures.
Quetti has a 21-year-old daughter, Jackie, with epilepsy who is attending Berkshire Community College. Her daughter has filed paperwork to transfer to a four-year college.
She told the group she was concerned about her daughter going off to college, but her daughter's aspirations were more important than her concerns.
"It's cathartic to share your feelings," Quetti said. "I think we gather strength from one another."
For additional information, parents are urged to contact the Epilepsy Foundation in Massachusetts, Rhode Island, New Hampshire and Maine.
To reach John Sakata:
firstname.lastname@example.org, or (413) 496-6240.
On Twitter: @jsakata
TALK TO US
If you'd like to leave a comment (or a tip or a question) about this story with the editors, please email us. We also welcome letters to the editor for publication; you can do that by filling out our letters form and submitting it to the newsroom.