Teen raises scoliosis awareness
She plays the guitar, plays soccer and knows a bit of sign language. She lives with her grandma, her grandma’s boyfriend and four cats. Last year, she was starting up a support group, and, this year, she got a state proclamation passed.
She is 14 years old, and she has scoliosis.
Her name is Elisabeth Harkins.
Scoliosis is a sideways curvature of the spine, according to Dr. Maurice Wallace of Spine Doctors of Aiken.
It is a deformity that often occurs while a child is growing, particularly before he or she hits puberty.
Discovering her scoliosis
Scoliosis often is tied with children, Wallace said.
Types include infantile scoliosis, seen in children from birth to 3 years old; juvenile scoliosis, seen in ages 4 to 10 years old; and adolescent scoliosis, seen in ages 11 to 18 years old.
“The common causes of scoliosis are congenital spinal columns, neurologic disorders and genetic conditions,” Wallace said.
Most of the time, though, the case is unknown. When this occurs, the patient is diagnosed with idiopathic scoliosis.
There is also hereditary scoliosis, which about one in three children have, according to Wallace.
“Early detection can help prevent future problems,” he said.
Harkins didn’t find out about her scoliosis through a screening.
“We found out by accident,” she said.
She was diagnosed with the disease when she was 10, she said.
She was about to leave from an appointment, when her doctor stopped her. He noticed her hips were a bit uneven, so he examined her.
Through other tests and use of a scoliometer – a level-type tool with a curve on it – Harkins’ scoliosis was diagnosed.
She has two curves – a large top curve and a smaller bottom curve, Sistare-Harkins said.
“It looks like a backward S,” Harkins said.
If the curve gets to be large enough, “it can lead to heart and lung problems” and even forms of paralysis in children, Wallace said.
Treatment involves observing the curve, putting a brace on it or conducting surgery, Wallace said.
Harkins went through an period in which, every four to six months, she had to go in for X-rays and checkups.
“I hated it,” she said, particularly about the X-rays, which were conducted by a massive machine she was turned away from. “The machine was so huge. I didn’t like it.”
When she was 12, her curve “had jumped significantly,” according Sistare-Harkins. Since she also had more growing to do, the doctor wanted to strap Harkins into her first brace.
“When we came home, she cried,” Harkins said, pointing to her grandma.
Her grandma admitted after all the “horror” stories she read about other children not wearing their braces and not liking them, she was worried about Harkins’ adjustment.
But for Harkins, “it kinda felt like a turtle at first,” but she got use to it, she said.
About a year later, Harkins outgrew that brace. Due to her ever-changing body, the doctor will sometimes add on extra paddings and other adjustments to help make it more comfortable.
“I’ve gotten more flexible with it,” Harkins said. To that, her grandmother just laughed.
“Well,” Harkins said, “I can do a full split with it.”
Harkins has to wear her brace for at least 18 to 23 hours, but, when she wants to go swimming, dancing or do anything other major activity, she is always been allowed to take it off.
She just puts it on afterward, Sistare-Harkins said.
The goal is to get Harkins out of her brace by the end of this year. She will still have to do follow-ups, however.
“She will never have a straight spine,” Sistare-Harkins said.
No matter the treatment method, scoliosis can be aided but not “completely corrected,” Wallace said.
The path to awareness.
Harkins has been the leader of the Curvy Girls Georgia/South Carolina Chapter since early last year.
The chapter is a branch off the national organization Curvy Girls, a support system for girls with scoliosis.
Harkin’s grandmother, Lisa Sistare-Harkins, found out about Curvy Girls. However, there were no local chapters.
“Well, why can’t I start one?” Harkins had asked.
With her grandma’s support, Harkins went for it. Now there are three other members, and Elisabeth is “always welcoming” new ones.
Harkins’ support group, though, is just one step, one “piece of the puzzle,” as Sistare-Harkins puts it.
Harkins wanted to take her message further. She wanted to take it so far that she contacted Gov. Nikki Haley about making June Scoliosis Awareness Month in South Carolina.
The proclamation was passed.
“Dear Miss Harkins, I wanted to let you know that the Governor’s proclamation for June as Scoliosis Awareness Month has been issued. An electronic copy is attached to this email, and a hard copy has been mailed to you at the address you provided,” Leanne DuPree from the governor’s office wrote Harkins on June 4.
Harkins’ school, North Augusta Middle School, surprised her with the Governor’s Citizenship Honor due to her efforts.
Her gold-stamped copy will be framed, Sistare-Harkins said.
As to how Harkins felt in the end: “That I got the governor to agree with me? It felt awesome,” she said. “I feel proud of myself. I know that I’m making a change.”
The teenager’s advocacy ties in with something else personal to her.
Harkins is part of the Girl Scouts. For her project toward the Scouts’ Silver Award, she chose to “raise awareness to scoliosis in (the) community,” she said in an email.
The Silver Award, she adds, is the highest award a Cadette can earn, she said.
Harkins will be keeping with her scoliosis advocacy, going for the Girl Scout Gold Award next year. One thing she would like to see be done is all elementary schools have scoliometers.
But, for now, she wears her Hello Kitty-decorated brace. She will attend Girls Scout camp this summer. She will be an eighth grader next year and, maybe, one day attend Clemson University.
However, “if the college does not have sign language as a foreign language, I will not go to that college,” she said.
For more information on Curvy Girls, visit the Facebook page Curvy Girls Ga/SC- Scoliosis Support Group or email Harkins at firstname.lastname@example.org.
The Spine Doctors of Aiken will be giving free scoliosis screenings at its annual Back 2 School Carnival on Aug. 17 at the USC Aiken Convocation Center, 375 Robert M. Bell Parkway.
For more information, visit www.spinedoctors-aiken.com or call 803-226-0061.