As we mark Epilepsy Purple Day on March 26, a Newry mum-of-two, whose seizures were brought on by the trauma of abuse, tells other sufferers that there is help out there, thanks to the charity Epilepsy Action.

Shauneen Simpson has spent the last 20 years living with epilepsy; her life at risk every time she takes a seizure. Now the 39-year-old Newry woman, who chose to come off medication to have her two children, wants to tell other mums living with the condition – ‘You’re not inadequate’.

According to Shauneen, it was not an easy road for her to get the diagnosis, given what causes the seizures. At just 13, Shauneen was abused by someone known to her and when she recalls the trauma she faced, her body can’t cope and a seizure is triggered.

She says: “At 19, I had my first seizure, and they were on and off over the years as I was put on different epilepsy medication and dealing with different neurologists.

“It was only in the last eight years that they really got to the bottom of what was causing my epilepsy.”

Shauneen has been diagnosed with Non-Epileptic Attack Disorder (NEAD), which is when seizures are not triggered by a physical cause. The diagnosis came about after a neurologist realised it was related to the abuse she faced as a teenager.

“I got a new neurologist, who was female, and I felt comfortable enough to tell her about the abuse I had faced,” Shauneen explains.

“She told me you can have seizures triggered by emotional causes. So, whenever I remember the abuse, my body essentially shuts down.

“At the time, they asked Johnny, who is my husband now, and my mum, to bring in photos of the perpetrator.

“I was in hospital, wired up to an EEG monitor and the neurologist watched my brainwaves as I looked at the photographs of the abuser and they brought on a seizure. That was how I got the NEAD diagnosis confirmed.

“That helped me understand what was going on in my own body, but it also gave me the confidence to talk about the abuse and to go to the police to bring the person to justice.”

Shauneen has long been living with the effects of what happened to her.

She says: “For most of my life, I would have had one or two seizures a year and at any time you take a seizure, you could die during it.

“I’ve had head injuries and broken teeth from different seizures over the years. I fell once with my leg between the bathroom cabinet and the wall, and I broke my toe and twisted my ankle.”

Shauneen has spent many years unable to drive due to her seizures. She also had to leave her job in construction and retrain as a reflexologist.

Her condition affected her living arrangements as well, with Shauneen and her husband having to move from a two-storey house to a bungalow due to the risk of her falling down the stairs during a seizure.

And things got worse when she went off her medication to have her two children, Maisy, now age six, and Jack, age three. But she was determined to be a mum.

“They were really bad when I was pregnant and breastfeeding,” she says.

“There was a stage during one of my pregnancies where I was having a seizure every week. We were very lucky to have two children with no side effects.”

However, the limitations of her condition soon got to Shauneen and when she learned of the charity Epilepsy Action and their Talk and Support Service, she was keen to let it all out.

She continues: “Whenever you’re on this path in life, you cope because you don’t know any other way. But at one of my appointments the nurse asked me how I was and I just started crying.

“I felt so inadequate, because the seizures were so debilitating and she asked me if I would like to talk to someone. That’s where Epilepsy Action came in for me. They were very good at reminding me I was a good mummy and I was doing the best I could.

“The counsellors within the service are very committed, and they care a lot. Even on the days where I wasn’t able to talk about what I was going through, knowing there was someone at the end of the phone was all that I needed.”

And Shauneen says it’s likely her family will take advantage of it too, as the charity offers counselling to the family members and carers of those living with epilepsy.

She shares: “My husband finds it very hard to watch. The seizure might only last two or three minutes, but he doesn’t know if I’m going to come out of it.

“He has to watch the kids watching me too and he’s talked about them touching my face when I’m lying on the sofa after having a seizure.

“I’m their mummy and I’ve started seizing and foaming at the mouth and they don’t know why. They see me with cuts and bruises from banging my head during them and it’s difficult for them. That’s something other children don’t have to see.”

She says the counselling will be particu­larly helpful for Maisy, her oldest, as she saw Shauneen’s epilepsy at its worst when she was off medication during her second pregnancy and Jack’s first year while she breastfed.

For now, though, she encourages any other mums struggling with the condition to reach out to the charity for support: “! just want to say to mums with epilepsy, ‘Whenever you feel inadequate, you need to remember you are doing the best job you can’.

“To those wee people in our lives, we are the best thing in the world, and the best thing we can do is be there for them, no matter what.”

If you or someone you know is living with epilepsy, visit today, or call Epilepsy Action’s helpline on 0808 800 5050.