Publisher Sue Hodgson talks with Katy Fairley, HeadWay Board Member and Business Development Manager at Kinetic Construction
As you know, HeadWay, Victoria Epilepsy and Parkinson’s Centre, is presenting its first annual health fair at the Mary Winspear Centre on February 27th. You were diagnosed with Juvenile Myoclonic Epilepsy (JME) at the age of 17. How did you get involved with the Centre and how important is it to have a resource like this?
I first heard of HeadWay via a Google search shortly after I was diagnosed in 2001. I was seeking any and all information on epilepsy, the prognosis, and its treatment. I found all of that through HeadWay and, over the course of a couple of months, spoke with the organization’s staff, who gave me the information I sought. Flash forward 14 years and I was approached to sit on HeadWay’s Board of Directors.
HeadWay provides important services and resources to those in Victoria living with Parkinson’s and epilepsy. It also supports their loved ones. While there is no medical link between the two, HeadWay is able to pool resources to assist the greater Victoria community.
Give us a glimpse of how you dealt with being diagnosed with epilepsy at such a young age?
I was diagnosed after a documented seizure the morning after my high school prom. I was 17. Documented just means it was seen by someone, and I was lucky that my best friend was there and called an ambulance.
The ER doctor, to her credit, recognized immediately it was JME after talking with me, though more tests would be required. As she described the various symptoms of JME, it occurred to me that I had been experiencing this form of epilepsy for years, probably since I was 14 years old.
I was leaving for university back east in three months. This was just one more thing I had to deal with and it was added to the laundry list of changes I was facing as I graduated. Looking back, it was a good distraction! My parents, somewhat surprisingly, let me work through it on my own. This was very helpful and I think it allowed me to “grow up,” feel like an adult, and deal with adult issues.
On the internet, I found a message board dedicated to various neurological disorders and a board focused specifically on epilepsy. I posted a few times but did far more reading. Through that site, I learned how many types and forms of epilepsy there are.
What is the outlook for people with JME and how is it treated?
While I’m no doctor, JME is fairly benign and “easy to treat,” meaning it responds well to, and can be controlled by, medication. There are numerous types of AED (anti-epilepsy drugs) and I have taken three of them so far. For me, the most disruptive aspect of having epilepsy has been the side effects that come with the medication. The first drug I took caused me to gain a great deal of weight and my hair to thin (just what you want when you are 18!). I was put on a second drug to mitigate those side effects.
Thankfully, I’ve been on a drug with little to no side effects for nearly two years. I am very grateful; not everyone who has epilepsy has that same experience with medication.
As Business Development Manager for Victoria’s Kinetic Construction and a key force for establishing the Women in Construction group, numbering close to 200 members, are there factors you have to consider with epilepsy that might affect your active role within the company?
None at all – and I am thankful for that. I have to be cognizant of my stress level and make sure I get the sleep I need. Both stress and lack of sleep are triggers for me.
I had a seizure in March of 2014, the first in 11 years. I hadn’t told anyone at Kinetic that I had epilepsy and now that I couldn’t drive for a few months until I was cleared by a neurologist, it was time to tell them. Kinetic was incredibly supportive and also gently curious. This gave me an opportunity to inform and educate, which is so crucial to changing people’s perspectives on epilepsy.
Seaside Magazine works with many of the high schools in our community encouraging young people to consider the trades industries. You are a great advocate for encouraging women toward a career in construction and trades. What makes you so passionate about this?
I am passionate about construction because I love it and want other women to find that same level of satisfaction in their careers. Construction isn’t for everyone, men or women, but it should certainly be an option that women consider. It is challenging and best of all, fun.
You are an active woman in business. Do you come across people surprised that you have epilepsy, as there is often an assumption of developmental problems associated with it?
I’ve had people comment upon learning I have it: “but you are so well spoken!” This is always a bit of a head scratcher for me. Do they mean that people with epilepsy can’t be well spoken or that every “normal” person does have that trait?
Why is it important to feel free to talk about the fact that you have epilepsy?
It’s important because there is still a great deal of stigma surrounding it. It turned out others in my family had seizure disorders but it was not mentioned or talked about until after I ended up in the hospital. It was swept under the proverbial rug.
Additionally, I strongly and passionately dislike the term “epileptic.” I am not an epileptic: I have epilepsy. It does not define me, no more than my blonde hair does. I’m not a blonde: I have blonde hair!
Photo by www.nuttycake.com.
