Nelson family learns to live with scoliosis

Leah and Rosie Eberle share their story during Scoliosis Awareness Month.

Leah Eberle (right) was diagnosed with scoliosis earlier this year. Her mother Rosie (left) is helping share her story during Scoliosis Awareness Month.

Nelson’s Leah Eberle first heard the word scoliosis earlier this year when her physiotherapist noticed her spine was curved. Since then she’s learned a lot about the condition, which she’s been diagnosed with, and for the past five months she’s been wearing a brace to help correct it.

“It’s uncomfortable,” said Eberle, a Grade 8 student at St. Joseph’s. “[The brace] bulges out, so I had to go shopping for new clothes to hide it. And it’s really annoying. It was weird going to school with it on.”

But she also realizes it’s necessary.

“It’s plastic but it’s super hard. I have to wear it for 18 to 24 months, and then hopefully my degree of curve will have gone down.”

Currently there’s a 37-degree tilt to her back, something you can see if you’re standing behind her, and the brace will hopefully keep it from bending any further.

“This is pretty serious if you don’t take care of it,” she said.

Eberle is sharing her story because June is Scoliosis Awareness Month, and she wants to make sure anyone who potentially has scoliosis gets the support and intervention they need. The cause of scoliosis is unknown, although it can be triggered by cerebral palsy and muscular dystrophy.

She has the following message for anyone diagnosed: “It can suck but sometimes it can rock like I can skip pushups in gym class.”

Leah’s mother Rosie has immersed herself in scoliosis literature since her daughter’s diagnosis, and is surprised “by how common this condition is and how little people seem to know about it.”

“It took us probably two or three months of solid research before we had a plan of action, and we did most of the work on our own,” she said, noting that if the physiotherapist hadn’t identified the problem when she did, Leah’s situation could have intensified.

“It’s usually not the parents who pick it up, because normally you’re not paying attention to the nuances of your child’s body or they’re moving all the time. Parents are often the last to know the child has scoliosis, until it’s well advanced.”

The trouble with current treatments, according to Rosie?

“Right now you can’t go back in time. You can’t go from 37 degrees to 35 degrees. Our best hope is to keep her where she is so that it doesn’t get worse.”

The spine tilt has all kinds of repercussions throughout the body, and has affected Leah’s knees and arches.

Parts of her body have been knocked out of alignment, something she’s going to live with for the rest of her life. Rosie believes the sooner the disease is identified, the better a family’s chances are of avoiding that.

“My main message is don’t ‘wait and see.’ Be proactive,” she said. “Do your research and get to a specialized centre.”

Leah is so grateful for the medical help she’s received that she hopes to become a medical doctor working in an emergency room.

“I want to fix people up,” she said.

 

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