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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.
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!
Visit Lindsay’s online store and purchase her line of clothing.
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!
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!
My long journey with scoliosis started seven years ago, when I was just ten years old. I was taking a yoga class when my teacher unexpectedly noticed that my back was uneven. Little did I know that this simple observation was actually the beginning of what would become a very emotional and life-shaping experience. After a year or so of appointments with different doctors, I went to BC Children’s Hospital, where I met Dr. Miyanji and saw an x-ray of my curved spine. What I found out was shocking: my curve had reached over fifty degrees, which meant I needed to get surgery. Two years later, my curve had increased to ninety-six degrees, and I then found myself in the hospital, eager to get the first of my two surgeries done.
Both surgeries were successfully completed. I couldn’t believe my eyes when I saw my final x-rays and my upper curve was reduced to just seven degrees! Dr. Miyanji and his team made a miracle happen, and they were helped by the kind staff and nurses who took care of me during my recovery in the hospital. They all changed my life in every possible aspect. By the time I went home, I felt fearless and ready to take on this healthy life lying ahead of me! The first test came when my staples were removed – I was dreading this moment. However, they were removed with ease, and I couldn’t feel it at all. They actually left the most amazing scar on my back. That scar is the proof that I have fought for what I truly wanted.
Two months after my surgery, my energy was completely back. I went back to school and was no longer worried about how people saw me when they looked at me from the back. I continued writing and sharing photos on my fashion blog. I shared my before and after x-rays and told my story to my readers. I think my story has touched many people. I owe my life to Dr. Miyanji and the rest of my family at BC Children’s. These past two years have been filled with so much happiness and success; I cannot wait to see what the future holds for me. My surgery was the start to the incredible life I am now living.
It has been two years since Lea had a two stage surgery to correct her scoliosis. She is happy, healthy, and proud of her where her journey with scoliosis has led her. Lea is a writer, fashion guru and stylist. She has appeared in Italian Vogue, and is now pursing fashion school in South America. We wish her all the best in all of her endeavors. Thank you for sharing your story with us, Lea!
Twelve years ago, I didn’t even know what scoliosis was. When I was diagnosed with the condition, I thought it was impossible. But once you notice that curvature, you can’t un-see it. My eyes would go to it every time I looked in the mirror, every time someone took a picture. My confidence deteriorated more and more the further I progressed into my teen years. It affected every aspect of my life. Eventually, at 19, I got the surgery. And I’m so glad I did.
Today, I am confident enough to have a career as a television news reporter and anchor. I’ve interviewed celebrities on the red carpet, and covered national news stories. If today my self-esteem were where it was back then, I couldn’t have done those things. None of this was possible without the medical and financial support of the Shriner’s Hospital of Philadelphia. They have given me the invaluable gift of the ability to love myself, and every twist and turn that was handed to me.
Kathy Ricciardi is a 20 year old patient of Alfred I. duPont Children’s Hospital in Wilmington Delaware. She was diagnosed with Adolescent Idiopathic Scoliosis when she was 10 years of age with a 22 degree spinal curvature. Despite bracing, her curve increased to 52 degrees and with significant truncal asymmetry (shoulders were uneven, hips not aligned with ribs), she underwent spinal fusion in 2009.
“Remember, if you ever need a helping hand, it’s at the end of your arm, as you get older, remember you have another hand: The first is to help yourself, the second is to help others.” This quote stated by someone who I admire, Audrey Hepburn, is what I cherish throughout this foundation.
On July 22, 2009 at Nemours/Alfred I. duPont Hospital in Wilmington Delaware, a young girl’s fate changed. As her friends continued their summer vacations and day trips, she was preparing herself for the biggest transformation of her life; spinal surgery. She could not help but fear of what was to come; however, having the comfort and support from her family, she was able to overcome her emotional struggles. She entered the hospital with a twisted spinal cord, but left with a new beautiful body. This young girl is me.
As the hours passed, nerve racking family and friends sat in the waiting room, waiting to hear the good news that my surgery was finished. It was a total of nine hours. The nurses at duPont were very informative, providing my mother with news about my condition every hour. When I woke up in my hospital room, it felt like I was only under for a couple of minutes. The time truly went by so quickly, I really had nothing to worry about in the first place. I was grateful to wake up surrounded by numerous family members and friends by my bedside. Their company eased the pain. The person I could turn to the most was my mother. She was there for me every step of the way; she even stayed with me day and night for the week I was in the hospital to make sure I was ok.
Simple things became difficult for me; there were new challenges every day. The simplest movements that I took for granted such as sitting, standing, walking, lifting my arms, turning in bed etc… became incredibly difficult. The assistance from my nurses and physical therapists helped me tremendously as I was in the hospital. They got me up and moving, whether I liked it or not. When I was granted permission to leave the hospital, my mother and sister took place of my nursing team. They both gave up so much for me, including trading their comfy beds for my bedroom floor, just to be by my side if I needed anything in the middle of the night.
After a couple weeks of recovery, my family members started noticing a difference in me. I was able to get up on my own and walk around the house. I even remember the day I was able to dress myself without anyone’s help. My physical condition became stable once September came along, however I wish I could say the same for my psychological state. Once my senior year began, I was very apprehensive about opening up about my surgery. I was nervous about things a girl should look forward to in her senior year. Instead of picking a dress for homecoming that was the right color, I spent my time trying to find one to hide my scar. Nevertheless, I was justify my feelings by replacing pessimistic thoughts with optimistic ones, and showed off my “mark” of a new beginning.
After several months of recovery, I decided I wanted to give back in a very special way to my hospital. After all of my experiences I had this certain philanthropic drive. December 2009, my high school administrators granted me the permission to hold a fundraiser for the children of Nemours. The proceeds from the student body went towards toys for the children and teens for the Child Life Program. Collections came leisurely until I decided to make an announcement to the entire student body that I am a patient of this hospital and described my summer surgery. As my shaking words came out, the love came pouring in, and together we were able to raise 1,000 dollars. I do not believe I could ever thank my friends, faculty members, and fellow students for their wonderful generosity.
I have come a long way and I thank Dr. Shah, the operation team, researchers, physical therapists, my family and friends for helping me along this journey. My surgery was truly a blessing and has opened many doors for me. I came to a point in my life where I accepted myself. I no longer saw myself as the girl with a scar or the girl with rods in her back. I saw myself as me…beautiful me. I receive many complements on my posture, my clothes fit perfectly, and I no longer suffer from pre-surgical back pain. What truly made me thankful for this surgery was when I was able to perfectly fit and zip into my prom dresses. Now, I am driven on making difference, big and/or small.
After my high school graduation, I became highly involved on my college campus. I am reaching out to several campus organizations to hold fundraisers, to raise money for handbooks for new patients diagnosed with scoliosis. I have reached out to the surrounding community, my friends, and my family for their help as well. And now I hope I can reach out to all of you. Please make a difference with me, by assisting in my efforts to raise funds for the production of these Scoliosis Handbooks. These handbooks will benefit children and adolescents by easing their emotional struggle as they undergo their own personal scoliosis journey. Your wonderful generosity will truly make a difference in someone’s life. Thank you.
This Scoliosis Handbook will provide patients with a guide to answer questions and provide information, which may minimize the fear and anxiety associated with being newly diagnosed. The handbook is being produced by the Setting Scoliosis Straight Foundation and will be translated into 5 different languages with plans for world-wide distribution. Kathy will be involved with organizing fundraising events through her college student body and within her community.
“One of my favorite quotes is be the change you wish to see in the world. I believe I can make a change by providing comfort to others through these handbooks. I hope my story can relate to someone and provide relief to their situation. Knowing I helped someone in some way, would be the greatest reward.”
Congratulations Kathy on being such an incredible inspiration! The Setting Scoliosis Striaght Foundation thanks you for your efforts which will help make the production of this handbook a reality! And future patients with Adolescent Idiopathic Scoliosis thank you, for your courage, commitment and willingness to give-back!
When I first found out I had scoliosis, one of my biggest concerns was how much it was going to affect my day to day life. I learned a great deal about myself when I started out in my brace. I found out I am tougher than I ever could have imagined, that a positive outlook can help you get through a difficult day, and to never take the little things in life for granted. The message I would like to give to others dealing with scoliosis would be that you are not alone and there are other people who understand what you deal with on a daily basis. Those same people are more than willing to listen to your good days and bad days, so reach out to them. I hope that my story inspires others to think that if I can do this so can they.
Izzy Kessler, now 20 years old, was born with Cerebral Palsy. In 8th grade, her scoliosis became so severe that surgery was necessary. Dr. Sponseller performed Izzy’s surgery at John Hopkins in Baltimore and was able to completely straighten her spine and give her perfect posture!
Izzy is an athlete, a high school graduate, a coach, and a mentor who began her athletic career early, excelling in bocce and swimming. In high school, she was the captain of the Bethesda Chevy Chase High School Varsity Co-ed Bocce Team, which won the Maryland State Championship. She now coaches that team and competes with the National Rehabilitation Hospital’s adaptive rowing program. She also volunteers two days a week at the hospital to mentor inpatient pediatric patients.