An Instagram post by celebrity Kylie Jenner led 19-year-old Intisar Mughal from her home in Kenya to a Long Island hotel conference room last week.
Mughal has scoliosis, a curvature of the spine typically corrected by wearing a hard plastic torso brace for years and possibly spinal surgery that leaves the patient with rods and screws in the back. After Jenner shared a photo of a teenage ballerina with scoliosis who posts as @scolerina9247, Mughal followed the link deeper into the internet and came upon the website for the Curvy Girls, a scoliosis support group founded by Leah Stoltz when she was growing up in Smithtown.
That brought Mughal to the third international Curvy Girls convention, a three-day event at the Hyatt Regency Long Island in Hauppauge that also drew more than 90 other girls with scoliosis from five countries. “It’s not something people talk about in Kenya,” Mughal says of scoliosis. “I feel like I came out of the closet.” She says she hopes to spearhead a local Curvy Girls support group there.
Long Island is still headquarters for the organization, which garnered widespread publicity in 2009 when Nick Cannon came to Stoltz’s Smithtown high school to present her with a Nickelodeon HALO Award, which stands for Helping and Leading Others, for starting the original group for adolescent girls. That event was then televised nationally. “I started it for myself. So I could meet other girls and I could get comfort,” says Stoltz of the Curvy Girls. The Curvy Girls has since grown to 83 groups in 12 countries; Stoltz, now 23 and working as an account executive at a Manhattan advertising agency, serves as the president of the organization’s board and runs the biennial convention with her mother, Robin, who is a social worker. At the convention, teen girls and their parents learn about new scoliosis developments and share in a fashion show where they model clothes they can easily wear over their braces, for instance.
Brielle Neumann, 16, of Northport, attended this year. She is the new co-leader of the Long Island Curvy Girls and was diagnosed at a very young age. “I was 5 and barely knew my ABCs and I was like, ‘Scoliosis? What?’ ” She, like other girls, had to wear a torso brace for 23 hours a day as her spine grew. “I wore it for seven years,” she says. But it didn’t halt the progression of her S-shaped curve. Two years ago, she had surgery that left her with two rods and 16 screws in her back.
“All of these people here got me through it. A lot of people in this room,” she says, breaking into tears. And now she pays it back. “A few days ago I did this with another girl,” she says. She took her shopping for clothes she could easily wear after surgery. “You can’t lift your hands above your head,” she says of recovery, so the two shopped for button down clothing that would be stylish yet easy to wear.
Gemma Campion, 20, of Sydney, Australia, started a group there in January; it has three members so far. “I only knew three people with scoliosis until three hours ago,” Campion says. “It’s really nice to feel like you fit in.”