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Valerie Chapman

MY JOURNEY WITH SEVERE SCOLIOSIS

I was thirteen when I was diagnosed with severe scoliosis. Wearing a brace wasn’t even an option for me.  The only thing I could do was have surgery, and I’ll never forget what it felt like when I discovered that this would be the only way to fix my condition.

I had been complaining about my back pain for a few months, but it wasn’t until my grandma was rubbing my back that we noticed an incredible hump around my lower back.  I’ve always been long and lanky, but my body had never been something that I was self-conscious about.  Now, I had a hump in my back, and I’d noticed that my waist was no longer symmetrical.  We were clueless.  We had no idea what was wrong with me. I was terrified, and I was worried.  I felt like I had some unknown disease, but I also had this feeling of hope.  I knew that whatever it was, I would be okay.

The s-shaped curve became apparent in less than six months, a rare case never seen by my pediatrician before; that is until I came into the doctor’s office the following day to find out what was wrong with me.  I didn’t know what to expect.  My pediatrician referred me to an orthopedic surgeon, a little miracle worker named Dr. Shufflebarger at Miami Children’s Hospital.

On April 2nd, 2013, one week after spring break, I had spinal fusion surgery.  I spent seven days in the hospital and missed a month of my last year of middle school in order to recover.  Recovery was the hardest part of my journey with scoliosis.  Being forced to leave all of my responsibilities behind drove me crazy!  I went from always being productive to feeling helpless and being homeschooled from my bed.  The recovery process didn’t allow me to go on rollercoasters for a year, so I missed out on memories with my graduating class when they went on their trip to a theme park, but I returned to school in May and delivered the class speech at my 8th grade graduation as previously planned.  This was the first time after surgery that I realized that even though I had sacrificed being my usual active self, it was all going to be worth it.  I would be healthy again, and for that I felt blessed.

Just one and a half months after my surgery, I flew to New York City to attend my brother’s graduation.  New York is my favorite place in the entire world, and when I stepped foot in the concrete jungle, I had completely forgotten that I had been lying in a hospital bed just weeks prior.  I was already climbing flights of stairs in the Subway, walking through Central Park, and experiencing life to the fullest again. I’ve always known that New York was a magical city, but this was when I truly realized it.  I still felt pain, but nowhere near the pain I had felt prior to the surgery. I know that the recovery process is different for everyone, and it’s hard, but if I could do it, then so can you!

It’s been over two years since my surgery.  As of now, I’ve ridden tons of rollercoasters and been to New York City several more times.  I’ve begun learning how to code, was elected Vice President of my high school class, became a part of my school’s badminton and bowling teams, and participated in all other “normal” teenage things.  I’m even the founder & CEO of my own business!  This surgery has made me more confident than ever! I’ve learned to embrace all of my imperfections, because they’re a part of who I am.  Scoliosis is part of who I am, but I won’t let it define me.  Don’t let scoliosis stop you from following your dreams.  I didn’t.  At just sixteen years old, I’m currently signed with two famous modeling agencies in New York & Miami.  I had dreamt of becoming a model since I was eight years old.  Who knew being long and lanky would come in handy?  I have a nine inch scar along the middle of my back, and honestly, I think it’s pretty cool!  It sets me apart from everyone else.

If there’s one thing I’ve learned about working in the fashion industry, it’s that being unique gets you far.  Makeup can cover up these imperfections, but if makeup didn’t exist, I’d still be proud to walk the runways with my scar totally exposed.  Beauty isn’t about looking perfect. It’s about being confident.  Believe it or not, my epic journey with scoliosis gave me an incredible sense of pride.  To help others feel the same sense of pride, I also created a fashion and lifestyle blog where I write about my personal experiences in the industry and the obstacles I’ve had to overcome.

I have so many more goals that I’m working hard to accomplish every single day.  I never stopped believing in my dreams, not even when the doctor diagnosed me with severe scoliosis.  As a result of my abrupt scoliosis, my pediatrician now gives scoliosis check-ups every three months instead of every six months.  It feels pretty great knowing that my case now prevents other kids from going through this little bump in the road.

I feel so blessed to have had such an incredible support system throughout this entire process.  Having family and friends by my side played a huge role during my recovery.  I’m so thankful for my doctor, nurses, and the caring staff at Miami Children’s Hospital for giving me another chance to feel confident with my body.  I truly believe that the most important thing you can do during times like these is value yourself, believe in your worth, and know that one day all your dreams can become a reality.  Don’t be scared to face scoliosis, and don’t be scared to follow your dreams.  You can get through this!  No medical condition, such as scoliosis, should ever stop you from achieving greatness!

When my grandma first found the hump in my back, I knew that, in the end, I would be okay.  In reality, I was better than okay.  I was able to overcome more obstacles than most teens my age.  The journey is part of who I am now, and I am proud of that person.  Not many people know that I went through this, but it’s something I’m proudly sharing with you because I know that you can get through it too!

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Tara Vasi

I was diagnosed with scoliosis in 6th grade during a routine annual check in the locker room during gym class. I didn’t know what was going on at the time or what the gym teacher was looking for, but when she tapped me on the shoulder and told me to come with her, I knew something was wrong. There were a few other girls that got tapped on the shoulder too, but we were taken to different rooms, and I never saw them again.

My parents took immediate action. My mom made an appointment to get an x-ray at Children’s Hospital in Boston. I still didn’t really understand what the visits up to Boston meant. We usually only went up there for special events, to eat clam chowder at Fanuel Hall, or that time we flew to Disney Land.

I didn’t understand why the doctor put a plastic photo with a squiggly line on the lit up board, or the constant need to wear that itchy backwards dress and bend forward to touch my toes. What I did understand was that while we were in Boston for these doctor visits, we always went to the Cheesecake Factory and at that age, I would pretty much do anything for a slice of cheesecake.

I stopped being excited about the post cheesecake slice when I was introduced to the brace. They told me the brace would fix my spine, or at least stop the curve from getting worse, while I finished my growth spurt. Even as this symbol of straightened hope, I quickly learned to hate the brace more then anything in the world. It was tight, hot and uncomfortable. I even started to not like cheesecake.
I was supposed to wear it as much as possible, to school, to bed, etc. I resisted full throttle and this caused friction between my parents and me, even more so then the typical adolescent/parent fights about makeup, clothes, bedtimes, and extra curricular activities. It even caused more friction between my parents.

They wanted me to wear it to school! I pleaded with them to not make me wear it to school. Did they not remember the opening scenes of Forest Gump?

I wore it to school one day. One day. A kid knocked into me. He literally knocked. I was so embarrassed about having to walk around like a zombie is a corset. I began to ditch it at the bus stop behind the “Welcome to Pine Ridge Estates” sign before getting on the bus to school and then putting it back one before I walked home from school.

I had no one to talk to about my dilemma. I felt like I was forced to lie to my parents.  Didn’t they know how painful the brace was? How painful middle school was? Did they think I was just being a whiney brat and making it all up? I needed someone to help them understand what I was really going in my body, heart, and mind.

I wonder if the brace would have corrected my curve slightly, had I actually listened to the doctors, and my parents, and wore the brace for the recommended amount of time each day. I wonder if I had had someone to talk to, a confidant, or someone who had been through it before, if I would have resisted the brace less.

I didn’t want to have a crooked back, but I was a kid and this ‘curved back thing’ didn’t feel like something a kid should have to go through. I didn’t think about the long term. I just wanted to be accepted. To be cool. To ride my bike and play soccer. No one else seemed to need a brace. It felt like I was the only one going through adolescence with a spine issues.

We went to a physical therapist for alternatives to the brace. She gave me a list of exercises to do every day, including Cat/Cow, spinal flexion and extension, seated side stretches, or lateral extension. I usually did my exercises while watching reruns of Seinfeld with my Dad.

The results of doing the exercises were amazing. I slept better and had less back pain during day-to-day life. The brace didn’t work for me, but this did. It was like a miracle.

Since then I have devoted myself to yoga. The practice helps with my body’s compensation act for the curve that exists, resulting in less pain and better posture. Choosing yoga also creates inner awareness, empowerment, and acceptance that has improved my overall quality of life. I love sharing the gift of yoga with others and hope that by giving back to the community, I can give young girls everywhere hope that you can still lead an awesome, fulfilling and happy life with a curved spine.

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Robert Savich

Detroit Marathon 26.2 Mile

I have scoliosis that started in middle school and grew to an 85% curvature by the end of high school.  I had a total of four major back surgeries, fusions—with rods and all.  The last surgery removed all of my hardware, as the initial fusions held.

It was difficult to stay very positive in those days, but I always did.  I was always a popular guy.  I never showed any weakness, and people didn’t ask about my scoliosis.   Still, it was always on my mind.

My back is still twisted, but I stay confident, and I don’t complain when it gets uncomfortable.  In fact, I never did.  Even after surgery I would not take much of the pain medicine, as I didn’t want to get addicted to it.

My experience with scoliosis has definitely made me stronger.  I am now thirty years old.  In the past year, I got married to my amazing wife, Kristina, and we are now the proud parents to a healthy boy named Marko.  He reminds me of myself when I look at him.  We are both healthy!

I am currently training to run the Detroit Free Press International Marathon on October 18th of 2015. That’s right!  You read correctly…26.2 miles!

When I run, I will be running for those who struggle with scoliosis and for my son Marko!  I had a very severe case of scoliosis, but I knocked it out, and you can too if you stay strong!

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Rachel Johnson

When I was fourteen years old, I was blindsided by a diagnosis of scoliosis. I was suddenly faced with the reality of having a severe curve in my spine that could only be corrected by spinal fusion surgery. I had been a passionate dancer since I was three years old, and I had no idea what my diagnosis meant for my future. What would my dancing look like after surgery? No one could tell me for certain, and that’s what scared me the most.

Following my diagnosis, my family and I began the process of searching for a surgeon. After appointments with a few doctors, we went to Nemours duPont Hospital for Children in Wilmington, Delaware and met with Dr. Suken Shah. As soon as we started talking, I knew he was the right doctor for me. After meeting Dr. Shah, everything went into fast motion. Before I knew it, the date of the surgery was set, and it was constantly looming in my thoughts. The day seemed to approach at an exponentially rapid speed, and by the time it arrived, I was absolutely terrified.

On July 6, 2011, I had spinal fusion surgery. Despite all my fears, the five-hour procedure went perfectly. Looking back, I couldn’t have asked for a better surgeon. During my five days in the hospital, I set my mind on recovery. I knew the worst was over, and all I had to do now was work towards getting my body back into shape.

The five-month recovery process was undeniably one of the hardest things I have ever undergone in my life, but it has completely shaped me into the person I am today. Slowly but surely, I got my body back to where it had been pre-surgery. The road was long and the journey was hard, but I now dance at a level that I never thought would be possible with two pounds of hardware in my back.

This entire experience has strengthened more than just my spine. I have learned so much about myself and discovered a confidence I never knew I had. This entire experience was an inspiration to me, so I decided to do my senior graduation project on my surgery. I made a video featuring myself, two of the girls I have mentored, and my surgeon, in which we all discuss scoliosis and how far it is possible to come after surgery. This video continues to make me smile every time I watch it.

Still, the most rewarding part of this entire experience came at my one-month post-op appointment. Dr. Shah asked me to mentor a girl from Bermuda who was about to have the same surgery I’d just had. One thing led to another, and I have now had the opportunity of mentoring several girls facing spinal fusion surgery. It has been incredible to be able to impact these girls’ lives so directly.

If someone had told me three years ago how much this surgery would change my life for the better, I never would have believed it. It is now clear, however, that it has been the best thing to ever happen to me, and I would not trade a second of this experience for any other.

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Nordirjon Sobirov

Nearly four years ago, Nodirjon Sobirov underwent surgery with Dr. Baron Lonner, a member of the Setting Scoliosis Straight Foundation, in order to correct his severe case of scoliosis. Nodirjon, a teenage immigrant from Uzbekistan, was interviewed by the New York Daily News in 2009, six months after his surgery.

Here is an excerpt from the article:

Six months after the lengthy surgery that could have paralyzed him, the once-shy Brooklyn high school student is shooting hoops, swimming laps and making friends.

“Before, I didn’t want to play with people,” Nodirjon said Saturday.”My back was crooked. I was embarrassed. Now I’m feeling great.” The 15-year-old came to New York with his family in 2007 after his mother won a green card lottery. Doctors in his homeland had delayed any back surgery, treating him instead with ineffective massages. The boy’s father, Akmal Kasimov. Said, “My son’s life has been returned to him.” Nodirjon’s spine was bent at a 130-degree angle, leaving him permanently hunched and crippling his lungs. By the time of the Oct. 29th surgery, he was gasping for air and turning blue. During the operation, the surgery team removed vertebrae from the boy’s spine and painstakingly reassembled it. For Nodirjon, the wait was worth it. The surgery, in addition to likely extending his lifespan, has increased his height by 3-1/2 inches. The Fort Hamilton High School freshman’s self-confidence grew even more. “Before the surgery, I didn’t like to go out,” the teen said. “I wore a jacket outside, even when it was warm. I didn’t want to show my back to anyone.”

Now, almost four years after his surgery, Nodirjon is still doing well, saying “I’m happy, I’m comfortable and I go out all the time now. I don’t feel any pain in my back, even when I work out every week.” Nodirjon graduated from high school this year, and he says that it has been a tough road with many difficulties along the way. Nodirjon’s experiences with scoliosis in-spired him to volunteer at a local nursing home in high school, where he assisted doc-tors and patients in his free time. Currently Nodirjon is looking forward to enrolling in a local college this fall, with the hopes of completing his bachelor’s degree in premedical sciences. Nodirjon says, “I had some hard times in my life, and I’ve seen how the doctor helped so many sick people, so I want to become a doctor.” Now that his back is straight and he feels his best, he says he knows he can accomplish anything.

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Melany Rivera


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Lisa Tran

My name is Lisa, and I am currently 26 years old. I was diagnosed with scoliosis when I was in middle school during a physical in P.E. I was unfamiliar with the condition, and it was all very frightening for me. Initially, I was referred to Dr. Peter Newton at Rady Children’s Hospital and was fitted for a brace that I was supposed to wear twenty-three hours a day. I tried my best for a year, but it eventually became so uncomfortable, and I felt so self-conscious that I stopped wearing the brace to school. I had surgery in October of 2000, just one month into my freshman year of high school. The immediate days following surgery were a struggle. I was very dependent on my family and had to relearn simple tasks like walking and sitting up. Slowly but surely, I was able to move about freely with some limited physical activity. It was a journey.


I am very grateful to have had such an awesome experience with the doctors and nurses at Rady Children’s Hospital. Throughout the years they have continued to stay in contact with me and have really helped me become the confident person that I am today. Years following my surgery, I do not feel limited to any physical activity. I have gone parasailing, zip-lining, kayaking, snorkeling, snowboarding, and have even sky dived. Today, I am on a new and exciting career path. I am studying to become a Radiologic Technologist and am doing my first clinical rotation at Rady Children’s Hospital. Now, instead of being the patient with scoliosis getting her x-rays taken, I do x-ray exams on patients who have scoliosis! It has been so amazing to be able to experience the other side of this process. Eleven years following my surgery, I cannot imagine how my life would be had I not had it.

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Lindsay Gordon

Strut for Scoliosi

Scoliosis has led me down a curvy path with many ups and downs, but Dr. Jack Flynn, at Shriners Children’s Hospital in Philadelphia, constantly reminded me, “You are running a marathon, not a race.” This line has always resonated with me in times of despair. Although it has been tough to preserve, I won the battle against my spine.

In 2011, I was diagnosed with adolescent idiopathic scoliosis. My curves were close to the extreme range and therefore required bracing. During this time, I was always on edge as my endurance was necessary. Still, going in, I was not fully aware of the difficulty and motivation required to wear a brace. I struggled to adjust my life around wearing this back brace for twenty hours each day for three years, but my curves did not progress into surgery range. Like I said, I won the battle against my spine!

As my personal journey concluded, I have become keen on making a difference for patients like myself. I have integrated my love for fashion, my enthusiasm for service, and my curiosity in business as a way to give back. I have designed an “athleisure” wear line with all the proceeds being donated to Setting Scoliosis Straight. The theme of my active wear promotes exercise for anyone running marathon or even a race. This trendy and unique line, Strut for Scoliosis, can be worn by everyone everywhere. I aspire to spread national and even global awareness about this deformity, as well as raise the funds needed to eradicate it. I hope to brighten the future of my fellow patients and see you all strutting. Let’s Strut for Scoliosis!

SHOP NOW!

Visit Lindsay’s online store and purchase her line of clothing.

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Lena Chesnut

Lena was diagnosed with Idiopathic Scoliosis at age seven. In 2010, Lena’s curve had progressed to a 52 degree curve, and she needed urgent surgical intervention. On her fourteenth birthday, Lena was released from Rady’s Children’s Hospital. Her surgery was a complete success and she even appeared in our Scoliosis Handbook.

Lena readily recalls how kind all of her nurses were, and she was very impressed with the level of care they provided to her during her stay at the hospital. Her mom, Theresa, took a week off of work to stay with her in the hospital every day and night. Although the time surrounding Lena’s surgery was very stressful for Lena and her friends and family, everyone in her life fully supported her during her surgery and the recovery process.

Spinal fusion surgery positively changed Lena’s life in many ways. Lena knows how important it was to have so many supportive people in her life during such a difficult time. Although she is a seventeen-year-old senior at Poway High School, who is active in track and is still busy figuring out teenage life, Lena has already begun looking for ways to give back to others. She currently volunteers once a week at Setting Scoliosis Straight. Lena is also planning to become a pediatric nurse so she can work with children, assisting with their health and providing them comfort in their time of need.

Setting Scoliosis Straight is very grateful to Lena and all she has given us, and we look forward to all she will do in the future. We are confident that, whatever it is, it will be great!

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Leah Humes

I, like many others, was completed blindsided by my scoliosis diagnosis in 2012. I have always been a very active person and have competed on sports teams since the age of four. I started developing fairly severe back pain at the age of 15, but never thought too much of it. At that time, I was playing AAA soccer and basketball, in addition to representing my Montreal high school team in soccer, basketball, and flag football. During my senior year in high school, I decided that I wanted to start exploring American Prep Schools since I wanted a new academic and athletic challenge. After many different school visits in Massachusetts and New Hampshire, I was admitted to a great independent boarding school. During my two years in Massachusetts, I continued to struggle with what became more severe back pain. It wasn’t until the spring of 2012 that I finally went to the hospital for X-Rays, and I was devastated by the results. I had a 45 degree curvature and had to seriously consider surgery if I wanted to live comfortably and attempt to keep competing athletically.


At this point, I had been accepted to a Division III American College and was looking forward to playing on the university’s soccer and basketball teams. In Montreal, I worked with Dr. Parent and his team at the Sainte-Justine Hospital. Everyone was exceptional throughout this entire process. They were able to schedule surgery for July of that year, but that meant that I would be out for my first year of college athletics. I was far from excited about this news. However, Dr. Parent and my dad reminded me to consider my options: take a year off for surgery or risk not being able to continue my athletic career at all due to severe pain. The thought of never being able to play competitively again scared me, and that’s when I decided that I wanted to go through with the surgery.

Deciding to have surgery was a very hard decision. The surgery alone frightened me. I couldn’t help but worry that the surgery could go wrong, my athletic career could come to an end, or that I may not recover properly post-surgery. Well, all of those worries were for nothing. I was fortunate to have an amazing doctor who successfully completed the surgery (to no surprise) and helped me get back to playing collegiate soccer and basketball within the year. It would be a lie to say that the recovery was easy, but every day was an improvement, and that was encouraging.

Today, I am happy to say that I recovered tremendously well and became a better and stronger athlete after my surgery. I no longer suffer from back pain. I was able to train and compete with my teammates and feel physically better about my body. At the College level, I was able to become an impact player on my soccer team for three years, and I had the honor of captaining my team during my senior year. I was also honored to receive the MVP award!

Going through with this surgery was one of the best, yet scariest decisions I have ever had to make. That said, I am forever grateful for the decision I made and for the amazing team that I had supporting me from day one. I am healthy, happy, active, and stronger than ever. A big thank you to Dr. Parent and the Sainte-Justine Team in Montreal!

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