I am Sylvie and I am 13 years old, going into 8th grade. I love school, lacrosse, tennis, and squash. I have an 11 year old sister and a dog, Golden Retriever, named Hermione and a yellow lab named Ozzie. I was born and raised in Cincinnati, OH. I love to travel, read, listen to music and spend time with friends.
I was diagnosed with scoliosis, a 36 degree curvature in August 2021. Since then, I have been using a Boston Brace >18 hours per day. This brace has caused a lot of problems for me including weight loss, pain, and hospitalization. I continue to use the brace and follow-up with my doctor at Cincinnati Children’s Medical Center regularly. I did not have a group of mentors or scoliosis support when I was diagnosed. My mom, dad, and family have been very supportive and encouraging. I look forward to broadening my circle and helping other girls through the scoliosis journey.
I went through diagnosis and a year of bracing > 18 hours a day without a support group to sort through many questions and issues. My friends at school knew that I was diagnosed but had no understanding of what the experience was like. At times, the diagnosis and bracing became isolating because I had to handle the many challenges on my own. For example, how do you dress with a scoliosis brace? How do you carry it around with you? How do you handle issues if the brace doesn’t fit quite right? What happens if the brace doesn’t work and you need serious spine surgery? These were many questions and issues I had to deal with on my own. Due to the fact that I handled the first year on my own, I understand the value and importance of a peer group that can lift each other up.