Student fundraises for crucial US surgery

Student Jessica Covey seeks surgery South of the border to relieve her pain and restore her ability to function

Covey, pictured above, underwent her first operation on Feb. 26.
Covey, pictured above, underwent her first operation on Feb. 26.
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Jessica Covey’s time at Queen’s has been far from what she imagined it would be, but that hasn’t stopped her from pushing to complete her degree.

Covey, a health studies and psychology student, suffers from Ehlers-Danlos Syndrome (EDS), a group of connective tissue disorders.

She and her family are hoping to raise funds for a series of surgeries — with a total price tag of $120,000 — that will help her function as she used to.

Diagnosed with EDS in 2010, the pain and mobility issues associated with the inherited syndrome have made it difficult for Covey, who now uses a wheelchair, to venture to campus. Between 2009-10, she took a leave of absence from Queen’s and since fall 2012 has studied from home via correspondence courses. EDS results in a reduction of collagen, which is important for holding together skin, muscles and joints. Covey’s spinal instability means her head isn’t properly supported on her body.

“It’s been hard. I struggled a lot with seeing classmates graduate, and be able to do things that I wasn’t able to do, like go out and have fun,” said Covey, who started at Queen’s in 2007.

She said while her classmates were spending nights at the library, she was using most of her energy just to make it to class.

“I used to envy the people that could do that, go and sit in the library,” said Covey, who’s originally from Brockville but now lives in Kingston. “My first semester at Queen’s, I was in Stauffer a lot and I really liked the atmosphere, but as I got sicker it wasn’t practical for me to come to campus and do my studying so I sort of missed out on that experience.”

When Covey finally found a name for the pain and fatigue she’d been suffering, she felt a sense of relief — but also frustration.

Although she was diagnosed three years ago, before that she had experienced years of no answers and skepticism from healthcare professionals.

“I was constantly being told I was just depressed or that I was faking and that maybe I just didn’t want to go to school,” Covey said, adding that even after a doctor told her she was hypermobile she couldn’t convince him that that was the cause of her pain.

Her mother and brother Charlie also suffered from chronic pain issues. After reading about EDS online, Covey realized she’d finally found a label for what they’d all been experiencing.

Still, the struggle was far from over. Not much is known about EDS in Canada, and Covey’s family was unable to find anyone to surgically treat herself or her younger brother, whose health began deteriorating in 2012. He developed craniocervical instability — meaning his neck became weak and couldn’t support his head.

The family eventually found a surgeon in Maryland who specializes in EDS and was able to help Covey’s brother. It was around that time that Covey’s own health began declining, but doctors continued telling her there was nothing wrong.

“I was having daily headaches, dizziness, increased pain, my left hand started to curl in, and I wasn’t able to use my hands like I could before,” she said.

Then last summer, she blacked out while looking over her shoulder, something she knew as caused by spinal instability.

On Feb. 26, she underwent the first surgery in Maryland, which eliminated much of her dizziness, headaches and the burning in her ears.

It was paid for in large part by the leftover funds from the $100,000 raised for her brother, who recovered quicker and easier than anyone had anticipated. The family is still working to raise the funds required for Covey’s remaining two surgeries.

She hopes to undergo the first of the two operations in the summer, and she hopes they’ll allow to once again complete normal tasks, like washing her own hair.

She’s now turned her sights towards increasing awareness of EDS nationally, and to that end has started the first Canadian branch of the Chiari & Syringomyelis & Related Disorders Foundation.

She’s become an advocate for those suffering for EDS, and was involved with Queen’s InvisAbilities.

Covey is also intent on finishing her degree. With six courses left, she’s aiming to be done sometime in the next academic year. She wants to pursue a master’s degree in occupational therapy and eventually a PhD. She hopes to specialize in occupational therapy for people with hypermobility.

She also hopes to eventually resume her volunteer activities; from 2008-12 Covey volunteered as a Peer Health Educator (PHE) and from 2011-12 she was a Peer Mentor to a student who was also dealing with an illness.

“Being a PHE was a big part of my life,” Covey said. “It made me feel more like a ‘typical’ student, and I got to meet a lot of great people.”

She said she’s got her eyes on the future.

“I feel like my life is on pause right now,” she said. “My brain wants to do stuff, but my body won’t let me.”

To donate to Jessica’s fundraising campaign, visit Jessica’s Fight with Ehlers-Danlos Syndrome & Spine Instability on indiegogo.com

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