Three years ago, the Sault’s Emily Wilkinson was diagnosed with a rare disease known as dysautonomia.
Having the disease, Wilkinson told SooToday, “basically means my heart rate goes up way too high, so that if I stand up my blood pools in the legs and then the brain doesn’t get enough oxygen and blood flow, so the heart beats faster to compensate.”
“The brain tells the heart to beat faster and faster until you get dizzy and pass out.”
“I’ve never fainted, but I’ve had blackouts where my vision goes, I’ve been bedridden. When I was first diagnosed, my heart rate went up to 177 beats per minute,” Wilkinson said.
Twenty-five per cent of those with dysautonomia, Wilkinson said, are frequently bedridden because of the disease.
That 25 per cent includes her mother Anna.
“I was lucky because I have youth onset dysautonomia. I have a better chance of completely recovering, whereas if you’re diagnosed as an adult you’ll never recover,” Emily said.
Wilkinson is being treated for dysautonomia with medication and the help of a Hamilton physician who she consults with via telemedicine through the Group Health Centre.
“I’m doing much better than I was in 2016.”
Despite the disease, Wilkinson is still kicking.
Wilkinson currently plays soccer with the Sault Ladies Soccer League within the Sault Amateur Soccer Association (SASA) and coaches a Northern Heights Sports Club girls soccer team.
Wilkinson, 19, is also a second year Sault College Early Childhood Education student, spreading out her two-year college program over three years because of her illness.
“Now, I’m trying to take things to the next level (in terms of awareness),” Wilkinson said, having been assisted through a city council proclamation and help from Sault Ste. Marie MP Terry Sheehan.
The raised awareness, Wilkinson said, has led to another local teen being diagnosed with dysautonomia, also currently being treated.
Joined by grandfather Clive Wilkinson, a well known, longtime local soccer figure who currently serves as SASA president and coach, Emily was on hand Wednesday at the Northern Community Centre’s indoor soccer pitch, where Sault Ste. Marie MPP Ross Romano put on his soccer goalie gear to fend off shots from Emily’s Northern Heights Sports Club soccer team.
“Emily came to see me last month and invited me to practice with her team...she told me how coaching really helped her with her disorder, and I used to coach a soccer team too, so that motivated me to come and practice with her team and help her raise awareness of dysautonomia,” Romano said, adding he will soon read a statement in the Legislature to raise awareness of the illness at the provincial level.
“Emily’s done a lot of work to spearhead this in Sault Ste. Marie to raise awareness of this rare disorder and contribute to this community. I’m proud of the work she’s done, and this occasion is a chance to raise some awareness and have some fun with the kids and for me to enjoy some soccer, something I haven’t had a chance to do in a while,” Romano said.