Livi’s Story: Being diagnosed with scoliosis led one NYC student to help others

Livi Lasner was at her doctor’s office when she noticed a younger girl who was also wearing a brace. Remembering how uncertain she had been when she was diagnosed with adolescent idiopathic scoliosis, Livi started talking with the girl and her mother. The girl said she was nervous, so Livi shared her experiences, which helped put the girl at ease.

 Later, Livi told her doctors she would like to serve as a resource for others with scoliosis who had questions or simply wanted to relate to someone who understands what they are dealing with.Shortly after, two people reached out and Livi connected with them on FaceTime.

 “It would have helped had I had someone like this to talk to in the beginning,” said Livi, an 8th grader living in Manhattan who enjoys swimming and yoga. “I’ve realized going through this makes me stronger, and I have a good experience worth telling.”

 Livi was diagnosed with adolescent idiopathic scoliosis (AIS) at age 10 during a routine physical.

At first, Livi was frustrated and confused. She didn’t know of anyone else with scoliosis. An active student who enjoys softball and other sports, Livi wondered, “Why me?”  AIS affects between 1% and 4% of otherwise healthy adolescents. Currently, there is no known cause.

 After being monitored for a while, her doctor diagnosed a 34-degree thoracic scoliosis and recommended a mign medical wearable.  “She had lots of growth remaining, so we recommended a scoliosis brace,” says Dr. Baron Lonner, Chief of Minimally Invasive Scoliosis Surgery at Mount Sinai Hospital and Professor of Orthopaedic Surgery at the Icahn School of Medicine. “The mign brace is  unique because the 3D printing process and the digital scanning of the patient allows for the orthotist to customize the fit to the patient precisely and results in the best possible corrections of the curve.”

 When medical services turned virtual because of COVID-19, however, Livi wasn’t able to visit her orthotist to have her brace adjusted. She grew a few inches during that time. As her brace no longer fit comfortably, Livi wore it less often.

 The consequences became clear: Livi’s spine curvature worsened to where surgery might be needed. The curvature of her thoracic spine increased to 44 degrees, and there was a secondary curve in her lumbar spine of 41 degrees.

 Adamant against surgery, Livi was fitted for a new mign medical wearable, which she committed herself to wearing at least 16 to 18 hours daily, including to school and summer camp. Livi appreciated the mign wearable’s lightweight and breathable construction and open-weave design during the hotter months.

  “I became dedicated to wearing the brace because I wanted to heal myself,” says Livi.  “When my doctor said I might have to go to surgery, I was dedicated to proving that statement wrong. I felt I was very capable of healing my body.”

 During this time, Livi also became inspired to help others who have scoliosis. In addition to offering herself as a resource, Livi is creating a non-profit foundation to help people pay for medical wearables and treatment.

 “I’ve come to the realization that there are a lot of people who might have a bad case of scoliosis and not have the money to afford getting a brace,” she says. “I thought that I should give back because I've been so fortunate to have amazing family and friends and good doctors to help me through this. I felt it was very important to give others the opportunity as well.”

 Livi is creating the nonprofit and building the website with help and support from her mother, Jennifer Altman, and her dad, Jonathan Lasner.

 “We are very proud of her,” says Jennifer. “It is inspiring to see her taking an active role in health equity.”

 X-rays of Livi’s back taken a month after she received her new device show inspiring results.

 Since wearing her new mign medical wearable, Livi’s thoracic spine curve improved from 44 degrees to 24 degrees, and her lumbar spine curve corrected from 41 degrees to 20 degrees. 

  “She’s been a great patient,” says Dr. Lonner. “From having a poor result at the beginning to now being a patient who doubled down and really wore her brace diligently, it looks like she will avoid surgery.”

 Livi’s also proud of what she has accomplished.

 “I feel like it’s going well,” she says. “ I’ve come to the realization that it’s only temporary, and I understand that it’s only here to help me.”