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Patient Stories

Kelly Anderson

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.

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Kathy Ricciardi

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.

Kathy’s Story

“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!

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Jarrod Padilla

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.

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Izzy Kessler

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.

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Isebel Holmes

Isabel was born prematurely at twenty-nine weeks and was later  diagnosis with Cerebral Palsy.  She has been under the care of Dr. Mark Abel since 2001.  As Isabel continued to grow, her spine curvature did too, and soon it was causing her discomfort and negatively impacting her quality of life. Isabel had to have multiple surgeries to fix both kyphotic and lordotic curves in her back, but after six months of recovery time, Isabel’s family was able to see astonishing improvements in Isabel’s daily life.  Her pain has lessened, her sleep has improved, she is able to take less medicine, and she can face forward to see who she is interacting with.  Also, due to Isabel’s increased lung capacity, her speech has improved, and her parents are able to hear her say things that she couldn’t before.  The Holmes are very happy with Isabel’s spinal surgery.

“We are so grateful to see these changes in her life.  I think we got excellent guidance as well as surgical expertise and care.  Thank you, Mark Abel.  We owe you so many thanks for your help in bringing back Isabel’s smile.”                     — Penny Holmes

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Helena Roberts

Diagnosed with scoliosis at age eleven, I was quite unaware of the long journey I had ahead of me. At the time, the only setback my condition presented was the necessity of wearing a back brace during sleep. I continued with my daily activities as normal and felt just as able as any other dancer in my ballet class. However, as the years progressed, the effects of my scoliosis became increasingly noticeable. Inflicted with an “S” shaped curve, I suffered from not only a peculiar looking torso, but also immense discomfort. It seemed that with every visit to the doctor, the degree of my curves worsened, and the plausibility of surgery increased significantly. I tightened the straps of my brace and prayed that I would be spared the inevitability of surgery, so that I could continue pursuing my passion for ballet.

Five years after my diagnosis, I realized that the daily back pain and constant discomfort were too great for me to not take further action. Reluctantly, I decided to undergo surgery. Considering all things, but especially aware of my love for ballet, this was not an easy decision. However, it is one that I will never regret.

Two rods and twenty-two screws later, the curves of my spine decreased considerably. Though post-op life certainly proposed a difficult challenge, I recovered nicely with the support of my family and friends. Day by day, I regained strength and worked my way up to performing daily activities again. Making sure not to bend or twist too much, I returned to school and continued on as normal. After waiting six months for my spine to properly fuse, Dr. Shufflebarger released me of any restrictions, signifying that I was finally healed enough to return to ballet.

In my battle with scoliosis, I successfully conquered my condition. Only nine months after having surgery, I performed in the ballet, Sleeping Beauty, as if I had never undergone surgery. Despite my previous doubts, I am amazed with my current levels of mobility and flexibility. Additionally, I gained about two inches in height and near perfect posture after the procedure. Having surgery was undeniably the right decision for me. Today, still less than a year after surgery, I rarely experience any back pain and continue to grow stronger every day.

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Eve Moll

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Haley Gelberg

During the same visit that I got my scoliosis diagnosis, I also learned I needed surgery. It was shocking, scary, and confusing, but my favorite quote which got me through not only my scoliosis experience but changing schools, applying to college, and fighting for the starting goalie position was: “You’re braver than you believe, and stronger than you seem, and smarter than you think.”

Haley’s curve was at 62 degrees by the time she had surgery, but it seems as if her drive, her determination, and her commitment to being great at absolutely everything she does never let her slow down. She has always kept moving forward. Perhaps because she’s braver than she ever believed, stronger than she ever seemed, and smarter than she ever thought! This Scoliosis Star shines brightly!

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Gabriella Gimber

On May 17th, 2010, when I was fourteen years old, I underwent a spinal fusion. My spinal fusion was performed by Dr. Peter Newton at Rady Children’s Hospital in San Diego, California. At the time of my surgery, I had a sixty degree right thoracic curve that was only going to continue to get worse. Having a surgery was scary, but the thought of living a life of disfigurement, back pain, and physical limitation was scarier. That’s why I decided to have the surgery.

After my surgery, I was given a squishy heart-shaped pillow from a girl named McKenna Keyes. McKeena had the same scoliosis surgery I had, only she had hers two years before I had mine. Before McKeena’s hospital stay, she had been given a pillow as a gift, and that pillow had brought her so much comfort that she wanted to share that with others. So McKeena began giving out heart-shaped pillows to other scoliosis patients undergoing spinal fusions. When McKeena left for college, I decided to continue her work, and I began providing pink heart-shaped pillows, information, and emotional support to teenager girls who are preparing for spinal surgery like I did.

I spent six days in the hospital, and although my surgery and recovery were probably the hardest things I have ever been through in my life, I succeeded. I made it through both experiences, and I am now stronger than ever! I wanted to share my story to remind each of you that, as you go through your scoliosis treatment, you are not alone! I want offer others heart-shaped pillows to remind them that they have nothing but love and good wishes being sent to them. A heart-shaped pillow may seem like a small thing, but mine reminded me that I was not alone and that others cared about what I was going through. My pillow gave me physical comfort and emotional support. In fact, I still sleep with my pillow today!

If you’re faced with surgery and feel afraid, know that you can do it! You can reach the end of your scoliosis journey stronger and happier than ever!

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Emm Arruda

Emm Arruda’s exciting new partnership with Setting Scoliosis Straight comes at the peak of June Scoliosis Awareness month and on the heels of being named Sephora Fresh Face of the Year by Canadian Arts and Fashion Awards (CAFA)!

Emm is doing more than spreading global awareness about scoliosis–a cause that has been severely underrepresented. She is flipping a stereotype on its head and challenging what it means to be beautiful and perfect as she climbs to the top of one of the most critical and competitive industries in the world. She’s confident, authentic, and unapologetically brave, and we couldn’t be more proud of her!

There is no question of the positive impact Emm will have for young girls and boys with scoliosis. Her ability to not only embrace her scar, but proudly show it off is a reminder to us all to live boldly. We hope young people with scoliosis will instantly see themselves in her and be inspired by her story.

“The last year and a half has been an absolute whirlwind for me and my family. Being so closely effected by scoliosis, this partnership with Setting Scoliosis Straight means the world to me. I’m so proud to be creating awareness for scoliosis and inspiring others to always follow their dreams, and that anything is possible.”

 

Emm’s Scoliosis Story

Bionic woman, rising star, model citizen…

Emm Arruda, only 16 years old when she was launched into a bustling modeling career, is redefining the ideals of beauty in one of world’s hardest businesses to crack, the fashion industry.

It’s hard enough for a model to make it out there, never mind if she has a 15-inch scar down her back. This was the case for the now 17-year-old Ontario native who made her modeling debut at New York Fashion Week in September 2016.

“I always thought it was something I would never do because of my body being all out of shape,” she says of the S-curve her back took on caused by scoliosis. “Even after the surgery, when people mentioned modeling to me, it seemed impossible.”

Emm Arruda was diagnosed with scoliosis at just 15, and opted for spinal fusion corrective surgery at SickKids Hospital in Toronto. After having two titanium rods and over 20 screws placed in her back to straighten the spine, Emm had a long but successful recovery which resulted in a two-inch height increase and close to perfect posture.

“It definitely used to bother me. Especially at the time, going through it, my body was in all kinds of crazy shapes,” says Emm. “Once it was fixed I struggled a little emotionally with the scar. But I 100% embrace it now. I’ve learned that it’s beautiful… to be comfortable in your own skin and to be yourself.”

Shortly after her surgery, her mother’s friend sent photos of Emm to one of Canada’s leading model management agencies, Chantale Nadeau Model Placement, where she was signed right away. While some modeling agencies may have viewed her scar as a setback, Chantale describes Emm as an “incredible bionic woman with better posture than anyone she’s ever known”.

Since then she has flown all around the world working for some of the biggest fashion houses including Chanel, Christian Dior, Louis Vuitton, Valentino, Céline, Alexander McQueen, among many others.

Emm’s life sounds like it was plucked right out of a book. And although her success story and incredibly adventurous life is fascinating, what we admire most about Emm is how humble and down to earth she is. During an interview with Novella magazine, Emm was asked to name something she couldn’t live without. Her answer, “the love and support of my family and friends; they mean everything to me.” Yes, she really is that cool.

 


Watch a video of Emm Arruda speaking at our 2019 Power Over Scoliosis Event!
Skip to 7 minute mark to listen to Emm’s talk.
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