What could be more frightening than being subject to an epileptic seizure that could embarrass, injure or even kill you at any given moment? Perhaps having the person you love most in the world being subject to that seizure.

Epilepsy does not operate in isolation. It is a family condition and every day parents, siblings, and other relatives deal with the heartbreak of seeing a person they care for dearly suffer the consequences of this medical condition. It’s something that can break a marriage. But it can also make a marriage.

“I’ve talked to people in both scenarios,” said Edna Kane-Williams, vice president of programs and services for the Epilepsy Foundation in Landover, Md. “They have a child with epilepsy and it has driven one or the other apart or away because it’s just too much to deal with to have a child who’s having multiple intractable seizures. It’s every day and you never get a break from it.”

But then there is the other side.

“I’ve also talked to families in that same situation and the family has really rallied and the spouses have been able to grow closer together,” she said.

Unfortunately, it is not only the adults who suffer when a family member has epilepsy. Other children can feel neglected when their parents devote all of their attention to the child with epilepsy.

“I’ve dealt with families where the other children develop problems because they feel like all of the family’s attention and resources are being focused on the child with epilepsy,” Kane-Williams said. “I think it depends on the age of the children and when the child who is affected developed the epilepsy and how the parents handle it. Because some children are fine. They really rally around and become very protective and the family really responds as a unit.”

Some children feel an onus when they have a brother or sister who has seizures.

“It can be very traumatic for the children who don’t have the disorder,” Kane-Williams said. “Because there is also a stigma attached to them – or at least they feel that there is. Because ‘If that’s your brother then what’s your story? What’s wrong with you?’ It’s just a mark on the family.”

Wendy Ann Coles lives in Thames, England, with her son Matthew, 22, who has epilepsy, his younger brother Peter, and her husband. She has experienced traumatic sessions that have threatened to tear apart her family.

“Matthew would attack me, his dad would shout at him, then Matthew would attack Peter. It was like a Tom and Jerry cartoon. I realized this had to stop,” she said.

And Karen Loomis of Camden, Ariz., ran into family problems when her mother-in-law stated her opinions on the medical regimen of Loomis’ daughter, who has epilepsy.

“She made a comment to me about three or four years ago that I just needed to get her off some of that medication,” Loomis said. “Don’t I wish that I could! My dear mother-in-law. This makes for a very difficult situation. At some point I will have to confront this issue.”

Spreading Hope

In her volunteer work in the Epilepsy Foundation’s Hope mentor program, Ann Donnelly visits schools, businesses, and families to talk about epilepsy.

Donnelly, who lives just north of Miami, Fla., was one of the original members of the Hope mentor program. All volunteers either have epilepsy or, like Donnelly – whose son, Sean, 22, has uncontrolled seizures – have a family member with the disorder. This gives them an authoritative voice in situations like the one Donnelly recently faced when she went into the home of a couple who recently had triplets and whose two-year-old son had just developed seizures.

“The family really had a handful there,” Donnelly said. “It happened to them right out of the blue. One day he just had a seizure.”

A family member contacted the Epilepsy Foundation and Donnelly paid a visit.

“They went through the usual panic you go through when one of your children has a seizure,” Donnelly said. “Sean started when he was very young, so I could tell them things they might expect.”

It is natural in those circumstances for the frightened parents to be down, Donnelly said.

“We had a long session that afternoon and, of course, the mother was looking at the worst possible scenario,” she said. “I told her ‘Let’s not borrow trouble. Your child is under treatment. You do have to take reasonable precautions, but you can’t smother him. You have to allow the child to grow.’ ”

Donnelly said she often talks to parents about having to walk that fine line between protecting a child and giving the child the freedom needed to develop.

“A child can be very manipulative,” she said. “All of a sudden if something is setting that child apart from other members of the family, everyone tends to baby them and overprotect them. You can build up resentment in other members of the family.”

And a parent can often be oblivious to what is developing, Donnelly said.

“It’s hard when you’re in that situation sometimes to know what’s going on. When you’re in the midst of a situation, things happen and you’re not aware of all the consequences. But if you take the ability to do for themselves away from them, you’re doing them a harm. You’re not helping them.”

Donnelly said that she volunteers her time and effort because when her son started having seizures, there was no one to explain this frightening condition called epilepsy.

“When Sean had his first seizure there really wasn’t anyone to help us understand,” she said. “So especially with parents with newly diagnosed children, I can share some thoughts. I can’t tell them what to do but I can give them some of my experience.

“And if I can make it easier for someone else who has a child with epilepsy, then that child’s life will also be easier.”