Scoliosis is More Common Than You Would Think

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Scoliosis affects about 3% of the US population. That’s 7 million people. Some of those people are around you every day.

When I was 12 years old, I was diagnosed with scoliosis and began treatment by wearing a back brace for 18 hours every day. Later, my doctor and I decided the best treatment option would be spinal fusion surgery. I will be undergoing this surgery in July 2017, however, going through this journey as a young girl before even entering high school strongly affected my middle school years and my self-image. Though I learned to accept my uniqueness, many young girls with scoliosis do not.

To raise awareness of something close to my heart, I interviewed people affected by scoliosis, some even in the NDA community, to receive their input. For privacy reasons, they will remain anonymous.

1) At what age were you diagnosed?

“I was diagnosed at age 7.”

“I was diagnosed at age 12. It was a regular physical check-up where the doctor did a scoliosis check and then sent me for x-rays when they found two major curves.”

“I was first diagnosed when I was 12 years old by the school nurse in the middle of sixth grade.”

“I was diagnosed when I was 13 years old.”

2) What treatment have you received for your scoliosis?

“I got a back brace at age 12 and still have to wear it now (at age 14).”

“I wore a back brace for 2 years, 20 hours every day. Finally, it hit a point a year ago when they said I needed surgery. I had the surgery in March of 2016. I was told I could get surgery then or wait a year but I knew I had to get the surgery either way. My surgery went really well; I was so lucky. To be honest though, the days in the hospital are terrible. I went in (to surgery) with one IV and came out with five. I was in the ICU for a day and that was intense and everything was weird. After that, it’s tough but not as bad as I expected. It’s different for everyone.”

“I was put into a brace that I had to wear for 23 hours a day. I got one hour off a day in order to shower and do physical therapy. I remained in the brace until I had stopped growing at the age of 15.”

“I found out at a children’s hospital that I had to wear a brace for 18-20 hours every day and I can’t get surgery before I turn 16.”

 3) How does it affect your daily life?

“From time to time I have back pains and it is the worst to wear my brace. My parents bug me every day about wearing it (to bed) but every morning when I wake up I always find it on the floor. I hate wearing it and it gives me bruises.”

“I have a scar (from surgery) that is over a foot long and I can’t bend majorly, but I can play sports except for hockey because I can’t have impact like getting slammed into the boards or to the ground. I still go to the hospital for checkups.”

“I was told if I made it until 19 without doing the surgery, it would be a miracle. I never did have it and have regretted not doing it when I was younger. I have had a lot of back problems most of my adult life, lots of pain and cortisone shots to relieve some of the pain. I’m doing okay but wish every day that I had had the surgery before life got busy and I had to be an adult.”

“Every day I have to wear the brace and I can’t do anything when I’m wearing it. I have about one more year for the brace and my doctors said wait and see before anything else happens.”

 

Scoliosis is more common than many people think. In most cases, the cause is unknown. This is called idiopathic scoliosis; other causes include injury or infection. Scoliosis is often diagnosed in adolescence and is more common in girls, rather than boys. While there are theories as to why this happens, the true reason is unknown. Commonly, treatment includes being monitored by a doctor for curve growth. Usually, when the curve reaches 25 degrees bracing and is recommended; and past 45 degrees is when surgery is recommended.

The truth is, no two people are identical in terms of their scoliosis journey. However, it is more than not being normal. For me, it is the humps in my back, how one rib pokes out more than it’s supposed to, why I can’t walk long distance or run without having excruciating pain. But more importantly, it is the way I get to share my scoliosis story. It is the way I get to raise awareness for something that is misunderstood, or not understood at all. And it is the way I am writing about this disease openly and shamelessly years after I first struggled to accept what was happening inside my body.

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