Apr 26, 2017 5 min read

Fourteen years old can be a difficult age for anyone.

When you have to relearn to walk, and some of your classmates start calling you a “kindergartner” in reference to your wheeled bookbag, and the school photographer physically tries to straighten you out while taking your picture, and summer is coming, which means you’ll have to wear an unforgiving swimsuit, 14 is especially loathsome.

“Kids are mean and want you to look like everyone else,” said Canonsburg resident Nicole Seifen. “Summer is horrible. I didn’t buy (a swimsuit) for seven years because I hated it.”

Seifen was born with scoliosis, a curvature of her spine that went undiagnosed until she was 13 years old. Despite the severe curves – one was 78 degrees and one was 63 degrees – she played several sports while growing up.

“Basketball, cheerleading, gymnastics, softball, karate – pretty much everything,” the 22-year-old said. “I was so used to the pain, I never suspected anything. It was like an ache in the middle of my back.”

Her mother, though, was suspicious.

“I noticed it when I was folding her clothes. Her one hip would stick out, and one side of the shirt would be way stretched out,” Luann Seifen said. “That’s how I noticed it had gotten really bad.”

Luann said she notified the school that she was concerned about scoliosis, but her student physical didn’t reveal any problems.

Soon after, Seifen’s pain increased. It hurt to breathe.

That’s when Luann took her daughter to a pediatrician, who recommended she see a specialist.

“Her spine was like an ‘S.’ She had surgery, and they corrected it as far as they could without leaving her paralyzed,” Luann said. “Had she not had that surgery, it probably would have killed her.”

Though the spinal fusion didn’t completely straighten Seifen’s spine, the curves were improved to 35 and 18 degrees.

According to the Mayo Clinic, scoliosis usually occurs during the growth spurt before puberty, but can occur at any time. Most cases are mild, but some are so severe that they can be disabling. Girls are diagnosed more than boys and account for the more severe cases.

While she had family and friends to support her before and after the procedure, Seifen said the most difficult aspect was feeling alone.

“The doctor who diagnosed me pointed out everything that comes with scoliosis that I didn’t notice. It made me feel deformed. The uneven shoulders and hips that I didn’t notice. I was born with it, which is why I probably didn’t notice,” she said. “I had a great group of friends in high school. But if you don’t have (scoliosis), you don’t understand. It was an emotional toll.”

As the leader of the local “Curvy Girls” support group, Seifen mentors younger girls who have been diagnosed with scoliosis. According to their website, Curvy Girls is an international network of peer-led support groups that reduce the emotional impact of scoliosis by empowerment and improving self-esteem.

Seifen’s group meets once a month to discuss their experiences. Ranging from 8 to 16 years old, the girls talk about what to expect after surgery and dressing to cover their braces.

“Most of our girls are young and have to wear a brace for years and years. (Braces) are not comfortable and make you stand out. The girls have to deal with people knocking on them and not being able to bend over to get a pencil off the floor,” Seifen said. “One girl doesn’t care if her brace shows, but most do.”

The girls chose a motto for their group: We’re different. Deal with it.

“No girl should have to feel bad about themselves,” Seifen said.

Aside from some soreness and stiffness in her back, Seifen said she feels well enough to exercise. She works in the nursery at her church, Canonsburg United Presbyterian, and Wendy’s, and plans to resume one of her passions by taking up horseback riding. She’s happy to be able to provide guidance to group members.

“We can understand what each other is going through,” Seifen said.

To find out more about Curvy Girls, visit www.curvygirlsscoliosis.com.