Hi! I’m Rory, I found out I had scoliosis when I had just turned 17, back at the start of 2016. At the time I was in my final year of high school, and my friends and family had noticed that my right shoulder blade had been protruding abnormally (see hilarious school swimming carnival photo Read more about Rory Rides the Road[…]
Dancing Through Scoliosis | Autumn’s Journey Hi! My name is Autumn, and I am a 15-year-old ballerina with scoliosis. I was diagnosed at the age of 14 after my ballet teacher suspected that I might have scoliosis. After seeing an orthopedist, I was diagnosed with a moderately sized curve and was then was immediately fitted Read more about Dancing Through Scoliosis | Autumn’s Journey[…]
The Unknowns: Controllables vs Uncontrollables Written by Annie Kramer At the age of 12, I was diagnosed with severe idiopathic scoliosis. Walking into a new school as a 6th grader had its challenges, especially with the additional challenge of my worsening spine. Before I knew it my doctors put me in a full-time hard shell Read more about The Unknowns: Controllables vs Uncontrollables[…]
Growing Up in a Brace By Kaisa Virolainen I was 7 years old when I was diagnosed with scoliosis in 2004. My scoliosis was juvenile (referring to childhood) and idiopathic (referring to unknown origin), and because I was so young, a brace was a more suitable option than a surgery. I would wear a brace, Read more about Growing Up in a Brace[…]
Tips for Heading Back to School We polled our scoli warriors to help get you ready to go back to school with your scoliosis brace! We asked them about different topics, and here are their responses: “If you feel like you want to hide your brace, you can wear your pants/shorts over your brace, then Read more about Tips for Heading Back to School from Fellow Bracers[…]
Dancing Through Scoliosis My name is Aika Takagi. I’m 13 years old. I wanted to share my scoliosis and dance journey. My scoliosis and dance journey are intertwined through my love for dance and pushing myself to do better in everything I do. When I was 11, I was diagnosed with scoliosis. Scoliosis is where Read more about Dancing Through Scoliosis[…]
Evie’s Bracing Success When I was in 5th grade, my gymnastics coach first spotted my scoliosis. I was then diagnosed with around a 40° lumbar curve and 22° thoracic curve in my spine and was placed in a Boston brace that I wore 20 hours a day. I remember the first thing I did was Read more about Evie’s Bracing Success[…]
Lydia’s Curvy Journey My name is Lydia and I live in Columbia, South Carolina. My journey with scoliosis has been just as curvy as my back. It all started when I was in 5th grade with a routine back test during gym class. When I got out of the dressing room, I got a note Read more about Lydia’s Curvy Journey[…]
Megan’s Scoli Journey in Malaysia Hi, my name is Megan and I’m just a regular 16-year-old who lives in the south of Malaysia. I first found out I had scoliosis when I was 12/13-years-old when a doctor noticed I was standing a bit slouched. Fast forward half a year with all the appointments and chiropractor Read more about Megan’s Scoli Journey in Malaysia[…]
We’re In This Together: Creating A Support Network For Girls With Scoliosis Abby is 12 years old and was diagnosed with scoliosis in 2018. Shortly after, she was fit with her scoliosis brace at Shriners Hospitals for Children — Portland. She and her mom, Christine, began looking to connect with fellow bracers around Abby’s age. Read more about We’re In This Together[…]
Turning Lemons into Lemonade Try to turn your bracing experience into a positive journey. Just think, when you bump into things where your brace is, it does not hurt since you hit your brace instead. You also have an instant table to write on when you take it off, and you can open straws really Read more about Turning Lemons into Lemonade[…]
A Day in a Boston Brace & Brace Tips Hi my name is Aika. I wanted to share a little about a day in a Boston brace. I have to wear my brace between 16-18 hour a day, so I choose my “off” time for when I am training as a competitive Irish dancer. I Read more about A Day in a Boston Brace & Brace Tips[…]
Aika’s Adventures: My Biggest Supporter My name is Aika. I was diagnosed with scoliosis a month after my 11th birthday. I was scared when I first heard but then was quickly relieved. My biggest supporter, my mother, is a scoliosis success story, although during her journey, she had days where she did not feel that Read more about My Biggest Supporter[…]
Aika’s Adventures My name is Aika. I was diagnosed with scoliosis a month after my 11th birthday. Within 10 months, my T/L curve had jumped 11 degrees to 32 degrees, which meant bracing was the next step. I was nervous when I heard I needed to get a brace; however, there are a LOT Read more about Aika’s Adventures[…]
Hailey’s Road to Bracing My name is Hailey, and this is my story! I am 12 years old, and I am from Hickman, Nebraska. I discovered I have scoliosis about 2 and a half years ago, but did not start bracing until this summer when my top curve reached 48 degrees and my bottom curve Read more about Hailey’s Road to Bracing[…]
Sophia’s Scoliosis Story Hi everyone!! My name is Sophia (@sophiasscoliosis on instagram), and this is my scoliosis story!! When I was 15, I battled back pain and stiffness for months before finally making an appointment with a spine specialist at Texas Scottish Rite Hospital for Children. On October 12th, 2018, I was diagnosed with severe Read more about Sophia’s Scoliosis Story[…]
Four Years and Four Braces Later: Lily’s Bracing Journey Hi! My name is Lily and I am 13 years old and live in Sunriver, Oregon. When I was 9 and in 4th grade I was having a really hard time taking deep breaths so my mom brought me to the doctor. My mom has asthma and Read more about Four Years and Four Braces Later: Lily’s Bracing Journey[…]
Emma’s Scoliosis Story Emma created this wonderful video to share her scoliosis story and to raise awareness during Scoliosis Awareness Month!
Fighting Scoliosis Together – Brooke’s Story Hi! My name is Brooke ,and I am 13 years old from Alberta, Canada. I was diagnosed with adolescent idiopathic scoliosis in May of 2018 when I was 11. I was sent to get an x-ray a few days later. At this point, I just felt extremely unlucky. I Read more about Fighting Scoliosis Together – Brooke’s Story[…]
Elizabeth’s Scoliosis Story I was told I had scoliosis on December 24, 2015. I was scared and sad and confused. I had no idea what this would mean. I heard the words, brace and surgery, but did not comprehend any of it.
I will say I was excited to get my first brace. Being 10, it was like a new adventure. My 5th grade class was so supportive. I wore it with honor. I showed them my x-rays, and the brace became "normal" for all of us. I wore it faithfully for over 22+ hours a day. Mom and I began Schroth Physical Therapy in Boulder at Avanti Therapy in February of 2016. For 2 months or so, we went down 3-4 times a week. Mom and dad bought a Swedish ladder and set up a "gym" in my room so I could do my exercises each day. Mom helped with the exercises too, as they sometimes got hard and or boring also became a member of Curvy Girls Scoliosis Foundation at this time. I was asked to be the Northern Colorado leader. We have a small group of girls that have scoliosis and try to meet once a month in order to encourage and support each other. I have also been able to attend Curvy Girls Conference for 2 years. Here over 150 girls from all over the world come to support and encourage each other on our journey with scoliosis. This is where I met a lady who supports kids like me with scoliosis. She has brought many smiles to so many with look-a-like braces for their stuffed animals or dolls, and custom artwork.
Curvy Girls has given me the opportunity to be able to speak at Zimmer-Biomet (a company that manufactures the hardware used in spinal surgeries), take part in a fashion show and fundraiser sponsored by Move the World Operations to raise money for Curvy Girls, and even be interviewed on TV regarding Curvy Girls and my scoliosis. I have also been able to meet Jamie Haggard (who is developing a new brace for scoliosis from Green Sun Medical, Dr. Vitale from Columbia University, and Michele Romano from Italy.
After the first year, in 2017 my x-rays showed my curves DECREASED! I got a new brace since I was growing. I continued with therapy and brace wearing. But now that I was in middle school, I was much more aware of how "weird and awkward" my brace was. There were many days I struggled with my self image, some people being mean and rude (even if they were "trying" to be funny) and limited movement in the brace.
The fall of 2017 I had a HUGE growth spurt, and by February of 2018 my x-rays revealed that my curves were being stubborn. They had increased, although not in a severe way. But by the fall of 2018, the surgeons saw that they had increased to possible surgical range. Mom, my PT and I discussed many options. Mom and I flew out to PA to visit doctors who are doing a non-fusion surgical approach to correcting the curves and rotation of my scoliosis. Mom sent the information off to insurance, but they denied any and all coverage claiming the surgery was experimental, due to the fact that the tether is not FDA approved (although Mayo Clinic in MN, Shriners in PA and many other doctors are doing the surgery with success.)
When this occurred I was devastated to have my health choices made for me by people who didn't even know me!!! This surgery no longer seemed an option. Mom, dad and I weren't sure if we wanted to pursue fusion quite yet. And the brace, oh the brace, was driving me crazy. I am in 8th grade now, and I just want to be "normal" without the brace as a focus of who I am. My friends and teachers and staff at Preston Middle School have been very supportive in accommodating me with this brace the past 3 years. I really thank all of them from the bottom of my heart.
So now, I continue to wear it, and do exercises and wait to see about insurance, money and what my aggressive curves will do.
Move the World Operations has graciously started a GoFundME page to try to pay for the surgery out of pocket. My local Curvy Girls group and I will also be a part of their fundraising this summer for a support walk and Fashion show and brunch to raise money for CURVY GIRLS in Denver area on June 30th!
Scoliosis will always be a part of my life. So many people have shown their love and support. I know my family and I just want the best possible outcome in this whole situation. And yes, we also want to make sure that God is given the glory and honor, no matter what direction my curves or this journey takes.
