Recurring blackouts from the age of 10 had led doctors to believe she had epilepsy. When the diagnosis was made, her life changed overnight.
“As a child, being labelled as epileptic singles you out like some sort of freak,” says Julie, 45, from Portland in Dorset.
The diagnosis meant she was overly protected and missed out on many childhood experiences, such as sleepovers and parties. “Other parents didn’t want the responsibility,” she says.
In addition, the medication Julie was given made her feel sleepy and generally miserable.
Being labelled
Fed up with the label and the medication, Julie stopped her treatment in her mid-teens and kept her condition to herself. (You are not advised to stop taking prescribed medication unless advised to do so by your doctor).
“I was tired of this label hampering my life,” she says.
Julie was determined to lead a normal life. She learned to drive, started going out with friends and had boyfriends.
“For the first time I felt in control of my life,” she says. She no longer felt faint or had a constant need to sit down. “I was generally feeling quite well,” she says.
But then she had her first blackout since stopping her medication. “It happened in front of my boyfriend, Andrew,” she says. She hadn’t told him about her epilepsy because she didn’t want it to affect their relationship.
In fact, Andrew handled the situation well and now they're married with three daughters.
“I explained that I wanted him to know me for who I was, not my epilepsy, and he was quite happy to go along with that,” says Julie. She continued to stay off the medication.
Fresh opportunity
The birth of their third child, Naomi, in 1992 presented Julie with an opportunity to revisit her diagnosis.
At two years old, Naomi was diagnosed with Reflex Anoxic Seizure (RAS), an arrhythmia that causes the heart and breathing to stop momentarily.
When Julie’s blackouts started becoming more frequent in 2001, she contacted the STARS (Syncope Trust And Reflex anoxic Seizures) charity, which gave her advice on getting an accurate diagnosis.
Julie was eventually referred to a cardiologist who specialised in fainting (syncope) in 2004. “I had a seizure in his office on my first appointment,” she says.
He made an immediate diagnosis and Julie was fitted with a pacemaker on the same day. "It was a bit of a shock but if it was going to make me feel better, then three cheers,” she says.
New beginning
Since having the pacemaker, Julie's life has changed. “I’m more confident, I work full-time and I can go about my life without fear.
"People don’t have to worry about me having a seizure like they did before, which was unfair on my husband and children.”
Julie's daughter Naomi was also fitted with a pacemaker in 2005. Earlier tests had shown that on one occasion her heart had stopped beating for 45 seconds.
By getting the correct diagnosis at an early age, Julie feels Naomi has been spared the labelling she endured as a child, and has enjoyed a normal childhood.
“I had nearly 30 years of not being believed, whereas my daughter got the right treatment so she won’t have to live through what I lived through.”
