Eight years ago Nina Saab had never heard of scoliosis. But when her then 12-year-old daughter, Alexa, was diagnosed with the spine-curving condition, her life changed in a way she never saw coming.
Saab, the co-owner of SAAB Salon Spa on Bank Street, said she felt a great deal of anger and denial resulting from her daughter’s relatively late diagnosis of idiopathic scoliosis.
Scoliosis is a condition where one’s spine curves in an “s” or a “c” shape.
Idiopathic scoliosis, which may be hereditary, is the most common type of scoliosis. It mainly affects those in their early adolescence. The majority of cases are mild and do not require treatment.
“Had [Alexa] been diagnosed earlier she could have been braced and the curve [of her spine] would have been less severe,” said Saab.
As she began researching her daughter’s condition, her frustrations grew as she discovered that scoliosis used to be tested for in schools in the 1960s through a simple procedure known as the Adams Forward Bend test.
The test consists of the child bending forward and touching his or her toes in order to reveal any deformities that may exist.
However, instead of dwelling on what could have been done, Saab decided to do something about what was already happening.
“I wanted to turn my negative energy into something positive,” she said.
So four years ago, Saab put her love of books and writing to the test and began to pen her first book.
Bookie and the Scoliosis Diagnosis is a 32-page children’s book that traces the process that Saab and her family went through – “Bookie” is her daughter’s childhood nickname.
It chronicles the family’s journey from the initial diagnosis by their pediatrician to their visit to the Children’s Hospital of Eastern Ontario (CHEO) in order for Alexa to be fitted for a brace. Alexa had to wear the brace 23 hours a day to prevent the curve in her spine from increasing.
Saab’s main goal with the book is to raise awareness about scoliosis.
She is building on the momentum she has gained over the past seven years, which recently culminated in Mayor Larry O’Brien declaring the first Wednesday in November as Scoliosis Awareness Day.
Maureen O’Neill, administrative coordinator for CHEO’s department of surgery, said the hospital is “ecstatic” about the book and that it “will give a tremendous amount of information to individuals afflicted with the [scoliosis] diagnosis.”
She said there is a lack of information available about scoliosis for young people. The book, in her view, is a unique way of getting it out there.
“There’s a fear of ‘what is my back going to look like?’ or ‘what will it hold for me in the future?’” said O’Neill.
The lack of awareness from patients, their families and the community around them is something that Saab is working to change. She recalls a shopping trip that ended with her daughter in tears.
“The sales associate said, ‘Oh my God. What’s that?’ when she saw [Alexa’s] brace. I had to take her aside and explain to her that she’s not missing a body part.”
Saab said she hopes her book will help at least one child get diagnosed earlier than Alexa.
People with severe scoliosis often do not live past the age of 40.
Details regarding the book’s publisher have not yet been finalized, but the book will be available for purchase on www.scoliosisdiagnosis.com.
The proceeds will go to orthopedic research divisions at children’s hospitals, specifically those specializing in scoliosis research such as the Texas Scottish Rite Children’s Hospital, where doctors have discovered a gene associated with idiopathic scoliosis.
“It’s a privilege to have this platform to give back,” said Saab.