Local Girl Wants to Help People with Dysautonomia “Get Back to Life”

Photo by Megan Pounder/SaultOnline

Local MPP Ross Romano laced up his cleats on Wednesday evening to help local Saultite Emily Wilkinson bring awareness to a health condition she has called Dysautonomia.

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. This condition affects approximately one per cent of the population and is so unknown that there are only a few doctors in the country who know how to treat it.

“It’s not rare, it’s just rarely diagnosed,” Wilkinson said.

Wilkinson told SaultOnline that she sees the only doctor in the province to treat hers, who her mother, diagnosed with the same disorder before Emily was, found online.

Wilkinson, a 19 year old Sault College student, was diagnosed in August of 2015, at the age of 16, after bouts of dizziness, faintness and a rapid resting heartbeat of up to 177 beats per minute.

“I was bedridden at that point – right after that, I started home school because I was having these episodes where I was seizure-like or was collapsing on the ground,” she explained. “I wasn’t fully fainting, but I was having tremors and it was kind of scary stuff – I don’t remember exactly all of it, but it was happening more and more often – I couldn’t go to school, couldn’t sit through five minutes of class.”

Wilkinson is now being treated for this with medication, water and exercise and salt, which she said is currently helping, but isn’t a guaranteed cure. However, she explained that due to the early-onset, she has a better chance of a full recovery, whereas adults diagnosed are incurable.

She now attends the ECE program at Sault College and is able to sit through up to four hours of class at a time.

Wilkinson started on a quest about a year ago trying to raise awareness for her condition, and was able to go through City Council, naming last year’s month of October as Dysautonomia Awareness Month. This year, she decided to take things one step further, and contacted both MP Terry Sheehan, who stood up for her in the House of Commons in October, and MPP Ross Romano, who joined her at Wednesday night’s event.

Wilkinson coaches soccer, and Romano signed up to let them shoot at him while he was in the goalie’s net.

“The MPP and I, we both have an interest in soccer, and he’s like ‘let’s just have the kids shoot on me, make a big event out of it,’ and I’m like ‘alright. Let’s go for it,'” she told SaultOnline.

“Emily mentioned to me how through playing soccer and coaching soccer, it’s been a real positive way for her to get help with this disorder – helping herself out, staying active and that was one of the main things that helped her out. So she asked if there was any way I could help, and when she told me she was coaching these girls, I said ‘well, if you’d like to take shots on an old hack of a goalkeeper like myself, you can feel free to do so,'” Romano said.

Wilkinson said she’s passionate about raising awareness because she wants to see people get diagnosed and helped faster. Currently, it takes an average of six years for diagnosis. Since she’s begun her quest, one teen in the Sault has been diagnosed and is now seeking treatment with the same doctor Wilkinson and her mother see.

“The faster you get awareness out, the faster you get help, the faster you get treatment, and just get back to life, where at one point it was taken away,” she said.