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news News Tuesday, May 26, 2020 Tuesday, May 26, 2020 9:49 PM - Tuesday, May 26, 2020 9:49 PM

Teen strives to be positive role model for others with scoliosis

Ka‘iulani’s story

Teen strives to be positive role model for others with scoliosis

Ka‘iulani first came to Shriners Hospitals for Children — Honolulu in September 2018 shortly after her 12th birthday. “We sought treatment at Shriners Hospitals for Children because my pediatrician was concerned about my back,” recalled the teen. “The curve in my back was getting bad, and they wanted me to wear a brace to get better.”

Ka‘iulani and her ‘ohana (family) learned about the specialized pediatric care provided at the Honolulu Shriners Hospital through a number of trusted sources, all of whom only had the highest praise to offer. “People had only positive things to say,” Ka‘iulani said. “When I first walked into the Honolulu Shriners Hospital, I felt very welcomed by everyone.”

Her first appointment began with a physical evaluation with pediatric orthopaedic surgeon Jonathan Pellett, M.D., who confirmed that Ka‘iulani’s curved spine was the result of scoliosis.

“We went over my X-ray results, and that is when Dr. Pellett told me that I needed to wear a brace, and that I needed to wear my brace for 18 hours a day when I’m at home,” Ka‘iulani remembered. “I had so many mixed emotions at this time, and I was trying to understand what was happening. I had so many questions, especially about my extracurricular activities. I asked if I could continue playing volleyball and dancing hula and Tahitian. I was so worried about that. I didn’t want to stop any of my activities.”

Dr. Pellett quickly assured Ka‘iulani that she could keep up her active lifestyle, which immediately set her at ease.

The next stop for Ka‘iulani and her mom, Marissa, was downstairs to the pediatric orthotic and prosthetic services department, where orthotics and prosthetics manager Ken Mandler, C.O., began the process of creating a custom brace for Ka‘iulani. “Uncle Ken started by measuring me, then he wrapped me in this thing that smelled weird. I felt like a mummy,” Ka‘iulani said with a laugh. “After that, I went to take pictures of my back so the doctors could track my progress. I felt like a model.”

Ka‘iulani and Marissa then went to the physical therapy department to meet with Rehabilitation Services Director Michele Chee, PT, D.P.T., and schedule Ka‘iulani’s first session. “I was nervous, because I thought I wouldn’t be able to do the exercises, and I didn’t know what to expect,” Ka‘iulani shared. “But now, my absolute favorite place to visit is the physical therapy room because Aunty Michele always knows how to make me laugh.”

Finding bright moments of humor during her treatment was crucial to Ka‘iulani’s overall healing process. “When Ka‘iulani was first diagnosed with scoliosis, it was hard for her,” said Marissa. “I noticed how upset she was becoming, and knew we had to make a change in mindset right away.”

“I was in total shock when I tried on my brace for the first time. Prior to picking up my brace, I felt like 'I can do this, and that everything will be OK.' But once I had my own brace, everything changed,” Ka‘iulani said. “I felt like my world was falling apart. I thought everything was going to change in a negative way, and that my brace was going to prevent me from doing things. My emotions were all over the place again, but this time I felt 100 times worse than before.”

Marissa tried to cheer her daughter up by taking her shopping for new clothes to fit around the brace, but Ka‘iulani was worried that her friends wouldn’t accept the changes to her appearance. “I was sad because I thought people would tease and make fun of me. I thought they wouldn’t want to be friends with me,” she said. “But it turned out they accepted me for who I am. My friends say they can’t even tell when I wear my brace!”

As the days passed, Ka‘iulani became more comfortable and confident wearing her brace. Her grandfather even built a ladder in her room similar to the one in the Honolulu Shriners Hospital physical therapy room so she can practice her exercises every day.

“My life has not changed in a negative way,” Ka‘iulani said. “I’m still playing volleyball for a local club and my middle school. I am still dancing Tahitian and hula, and I play the ukulele. I am able to continue living my life and being a happy teenager.”

This experience inspired Ka‘iulani to be a voice for other teens and children who have been diagnosed with scoliosis. She and her mom have shared their personal stories during informational sessions at the Honolulu Shriners Hospital, and they plan to establish a scoliosis support group in the near future for teens who may be going through similar emotions regarding their diagnosis.

“It’s OK to be scared, but there’s nothing scary,” Ka‘iulani said. “Shriners Hospitals for Children has helped me to understand scoliosis and how to deal with this condition. The staff at Shriners [Hospitals for Children] feels like family to my parents and me. They also have helped me gain confidence in myself."

“I have learned many things about myself through scoliosis. I am proud of all the obstacles I have overcome,” she added. “Having scoliosis and going through what I have gone through has made me a stronger person. I am so proud of the person I am now.”

Ka‘iulani wearing her braceKa‘iulani during physical therapy