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Patient Stories

Ella Glassman

My name is Ella Glassman.  I am a 13 year old girl from Davie, Florida. I am a friend, a daughter, a sister and a Girl Scout. I have many accomplishments I am proud of including being recognized as one of 50 Kids of Character in my county, serving as President of my elementary school and participating in over 15 community service projects that I helped organize. I love music, fashion, spending time with friends, going to sleep away camp and cooking . And, I have scoliosis.

An essential lesson I have had to learn in my life is to never allow yourself to feel a victim and give up on your goals just because a new obstacle comes your way.  I have been keenly aware of the importance of the desire to keep going and not give up as I have dealt with scoliosis.  When I was diagnosed with scoliosis, at age 11, I was completely shocked.  I found out I would have to wear an uncomfortable, hard plastic brace 16 hours every day and will not know for a few years if I will need major back surgery.  It would have been easy to give up and say I’m not going to wear the brace but instead I have a plan to follow and I stick to it. I also try to focus on the plenty I have in my life, rather than what is missing in my health.

I have always been passionate about giving back to my community and supporting those in need. I organized an event called “Ella’s Mitzvah Mini Golf Tournament” this past November to benefit Setting Scoliosis Straight. I was able to collect raffle donations from over 25 local businesses and sold over 150 raffle tickets.  In addition, I organized a fun night out for over 70 guests who came out to play mini golf, enjoy shaved ice treats and have fun! It meant so much to me to raise money for an organization as wonderful as Setting Scoliosis Straight. This event have raised over 1 thousand dollars!

As a Scoliosis Ambassador for this charity, I hope to help others who are diagnosed with the same condition.  I want those who are just now being diagnosed to know that not every day is easy but there is always a way to get through it.  When it feels overwhelming, I play with my dog or watch a good movie and I eventually feel better.  At first you may be embarrassed to tell other people about your scoliosis, but you will learn that there is nothing embarrassing about a serious medical condition. Those who care about you will not tease you or judge you, rather they will support and encourage you.  Now, for me and my friends, putting on my brace is no different than putting on my shoes.

Sincerely,
Ella Glassman

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Sydney Borchardt

My name is Sydney Borchardt and I am 13 years old.  I was diagnosed with idiopathic scoliosis at my 10 year old well-child checkup.  I didn’t even know what scoliosis was at that time.  My parents just told me the doctors were going to monitor my back.  Six months later, we went back to the orthopedic doctor for x-rays and my curves had progressed from 18 degrees to 38 degrees.  The doctor explained that I would need to wear a back brace to keep my curves from progressing.

At the orthotics office, I was shown the boston brace.  It was big and hard and I had no idea how I would wear it 23 hours a day.  At that time, I was a little too young to understand everything and my parents kept a positive attitude and expected the same from me. My parents planned a fun outing for me the day I got my brace.  It was a fun day, but the brace was hard to adjust to.  In time, it became a part of me.  I did feel lonely at times because I didn’t know anyone else that had scoliosis.  My grandmother had scoliosis and had spinal fusion, but she passed away from cancer before my diagnosis.  Having the straps on the back of my brace made it hard because I had to always ask someone else for help to take it off and put it back on.  My best friends became experts in strapping me back into my brace.

After 1 ½ year of bracing, my parents took me to Wisconsin for some specialized chiropractic care.  The chiropractic exercises were a lot harder than brace wearing, but I was committed to do it to try and avoid spinal fusion surgery.  After 5 months of the exercises and still wearing a brace at night, my curve had progressed to 42 degrees.  After much research, my parents decided to fly us to Shriner’s Hospital for a consultation for VBT.  I was so scared to have surgery, but my parents were really upbeat and positive about the possibility of VBT.  My stomach hurts even thinking about needles. I was more scared about having needles put in than the actual surgery.

On February 16th, 2018 I had VBT at Shriner’s Hospital in Philadelphia with Dr. Steven Hwang.  Within two weeks, I was feeling great and I certainly did not miss wearing my brace.  I am so thankful to Shriner’s and my parents for all that they have done for me.  I have also met many girls with scoliosis through the Curvy Girls organization.  I recently became the leader of the Oklahoma Chapter of Curvy Girls.  I want other girls to know that they are not alone.  It wasn’t an easy journey, but I am thankful to everyone who has had my ‘back’.  I feel more confident about speaking about my health issues.  My 1st goal is to get scoliosis screening back in Oklahoma schools and then work on better scoliosis care here in Oklahoma.

Sincerely,
Sydney Borchardt

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Maria Chiara Feadda

My name is Maria Chiara Faedda, from Italy. I am now 37 years old. I was diagnosed scoliosis when I was 11, and that was when I received my first brace. I was supposed to wear it most of the day, the only exceptions were lunch, dinner and while sleeping. My scoliosis was moderate and it affected the central part of the spine (I guess it was in lordosis form), this is the reason why the doctor decided for a brace and for constant physical therapy.

I started taking swimming classes for many years and went through some very painful therapies hoping to get rid of that painful and ugly brace. During those years, I had to learn to be stronger than other kids of my age, some of them were mean, they made jokes about my conditions and even called me “DEFORMED”. I have always been aware of being different, because of my spine, I couldn’t wear all the clothes I wanted due to the brace and I hated myself and my reflection in the mirror.

Over the years, I built up confidence in myself, and my parents and my family have been my strength. My friends encouraged me not to give up. The love I have always received has been an incredible blessing. It all changed with my family moving to Belgium where we lived for a few years because of my father’s work.

It was January 14th (my mum’s birthday), and I am sitting in front of Dr. Roussoly (he literally saved me), in his office at The Centre Médico-Chirugical de readaptacion des Massues in Lyon, France. I clearly see my spine x-rays hanging in front of me as the doctor says “SURGERY”, and he explains the procedure to my parents, I start silently crying, unable to stop the tears from my eyes. Hospitals have always scared me and all of a sudden I was to be in one for a while.

June of 1999, is when I had a 5 hour surgery, the surgeons corrected the curve by  inserting titanium rods on both sides of my spine and in between to keep it straight. After a few hours in intensive care, I was back in my room, and three days later I started walking again. I spent two weeks in hospital and it took six months (and a lot of physical therapy) to recover. The pain has been intense and I could barely do any normal activity but it was all worth it. You never completely heal from scoliosis, you learn to live with it.

This is the first time I have ever told my story, going through the scoliosis process marks you for life. It has left some insecurities about my body and I have scars and one that is visible on my back. Now, I have decided to share my story and help give support all the unique individuals that are struggling with Scoliosis.

To all the girls dealing with scoliosis, do not hate your body. You are not ugly, not a monster or deformed, you already are amazing women. To my mum and dad, and to all the parents of scoliosis fighters, thank you for the constant love and support that make you the extraordinary human beings that you are. To my fiancé, the photographer who took the pictures of my scar and made it a work of art. Thank you love, for showing me the beauty of my imperfection, and teaching me to love my scar the way the you do.

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Shae Smith

2018 Miss Springfield Outstanding Teen

When most girls are excited about new fashion trends and shopping in the junior section for clothes, there are a group of girls that struggle with body image and confidence due to Scoliosis.  Scoliosis is a sideways curvature of the spine. It can affect people of any age, from babies to adults, but most often starts in children aged 10 to 15.  For Shae Smith, it was at the age of 11 when she received her Idiopathic Scoliosis diagnosis and her self-confidence took a big hit.  Braced in a hard body shell for 23 hours per day, she had to learn to dress in a way that made her unique and attracted attention.  She was always trying to hide the brace, but learned quickly that she had to make the best of it.

As Miss Springfield’s Outstanding Teen 2018, Shae’s platform is one of passion as she is advocating for early stage detection, intervention and awareness of Scoliosis.  Creating a website and media movement #catchingthecurve, she hopes to educate parents and teachers on the ways to detect early warning signs.  She has also lobbied to MO government officials to mandate school screenings across the state and filed Senate Resolution No. 51 declaring September 1st Scoliosis Awareness Day in MO.

Not only does she want to educate, she also wants to show other girls that life does not have to stop with Scoliosis.  She says, “Scoliosis makes its mark on us and we use it to make a difference.” Shae is encouraging young girls like herself to take pride in their body whether wearing a brace, carrying a scar, or living with a rib deformity.  She is a competitive dancer, model and pageant title holder who is always asked about her deformity and knows the struggle with clothing fitting improperly, pulling to one side, or having a crooked zipper.

Fashion designers and clothing experts are also starting to identify the need for girls with Scoliosis and helping with styling tips.  Stores like Dillard’s are sponsoring fashion shows.  On March 10, 2018, Dillard’s at the Battlefield Mall in Springfield, MO, teamed up with Shae and hosted her fashion show in honor of these brave young girls.  The fashion show, “Confidently Curvy,” featured girls across the state of MO and Arkansas, along with a guest speaker.  Dr. Clayton Stitzel, one of the foremost experts on Scoliosis-based treatments and advocate for early intervention, traveled from PA to offer advice, share stories and discuss new non-invasive Scoliosis treatments

“Fashion is what we make of it and it starts with a movement where Scoliosis warriors stand together to educate others on catching the curve, and supporting each other through self confidence in our own skin and living out our dreams,” says Shae.

Her goal is to encourage others to join her and team up with a national organization to continue to bring the much needed awareness to this condition.

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Marisa Gelbart

Hi everyone, my name is Marisa Gelbart and I’ve been a part of the Setting Scoliosis Straight team for a little over a year now. However, besides being a part of Setting Scoliosis Straight, I’ve been mentoring people of all ages that will be having a spinal fusion surgery. While I mainly work with kids, my parents usually help mentor the parents of the child who will be the patient in their upcoming procedure.

I was diagnosed when I was ten (fourth grade). My older brother Eric and I worked for around five years traveling to different surgeons, physical therapists, and specialists that would try making our scoliosis more bearable than it was before. About 3 weeks after my 15th birthday, I ended up having spinal fusion surgery done by Dr. Peter Newton and his amazing team. My last x-ray before the surgery was an all time high of 107 degrees. The surgery lasted 9.5 hours and now that it’s behind me, I’m beyond grateful that I got spinal fusion done.

My advice for future patients would be to remain calm and look for the positive in all of this. Even though the degree curve and surgery time seem daunting, that isn’t the reality that many people face for this procedure. If anything, it’s less than half of that. The point of this procedure isn’t to make you think you failed with physical therapy and the brace didn’t work, this is allowing you to have a more comfortable, and happier standpoint in your life.

The reason I enjoy giving back to others is because when I was told I was going to need surgery, I felt like I failed all the hard work I was putting in. I was always told that surgery was the absolute last resort, and not a good resort either. However, after the entire process I learned how incorrect those statements were, and I’ve been able to grow as an individual much more confident in my skin and capable to do more things than ever before. I didn’t think anyone could relate to me because of the intensity of my curve compared to others, but now that I’m on the other side of the fence, I’ve come to find that I’ve related with so many people no matter what the degree of their procedure was. Throughout the entire process, there wasn’t one person who wasn’t on my side, and my family and friends have been there the entire way, plus now I can say I’m a cyborg.

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Tania Richard

My name is Tania Richard. I am 21 years of age and live in Miami, Fl. I was diagnosed with scoliosis when I was 8 years old and have been seen by Dr. Shufflebarger ever since. Great doctor by the way. I had upper and lower back surgery about two years ago now and ever since then I have had no pain or discomfort unlike before. It has been a while now and I feel great about myself and have no complaints. Before I had scoliosis surgery my spine was shaped like an “S” and I was concerned with my body image. I was afraid to wear a bikini because of how it would look on me. Now after my back surgery I feel confident and my self-esteem went back up. I am proud and feel comfortable wearing whatever I want. It has been the best decision I have ever made. Participating in this study means a lot to me. It shows patients how a surgery can be life changing to someone to better their health.

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Veronique

On July 30th of this year, I underwent surgery for my scoliosis. This was my first surgery ever, so needless to say, I was very nervous and afraid. My surgeon, Dr. Stefan Parent, really reassured me that I would be okay. This helped me trust him with my surgery. The first two weeks after surgery were the most difficult. I hardly slept at night because of the pain and nausea caused by the pain medication. I was certain that the pain would never go away and that I would never return to my normal life, but after just three weeks, I could see a big improvement. I didn’t walk like a robot anymore, and I even returned to school. After one month, the pain was completely gone. Now, I am happy with the results of my surgery. The speed at which the body is capable of recovering amazes me! I feel better about myself, I have no more complexes about my back, and I can confirm that this surgery was worth the pain.

 

 

 

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Stacie

It all started when I had a 25 degree curve. By the time it was close to 50 degrees, I didn’t like the way my body looked. After meeting with Dr. Shah and discussing a spinal fusion, I knew I had to have the surgery. It was the best decision I ever made! But I’m not going to lie. There was some pain involved – no pain, no gain! My family and friends got me through the pain with all their good thoughts, gifts to remind me of them, and love. It made me feel better knowing everyone was thinking of me. I even discovered how much my brother cared about me! WOW! The best thing about being in the hospital was that my Mom was there. Some of the male nurses weren’t bad either! After I went home, I couldn’t believe how quick my recovery was. I was back in the ocean by the end of August (I had the surgery in July)! When it was time for my first post-op visit, I was so excited to see all my nurses again! While I was up there I talked to one of the girls who just had the same surgery. I wanted to make her and her mom feel better. It has been 2 years since the surgery and I never looked better! Thanks Dr. Shah!

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Ryan

My name is Ryan, and I’m now sixteen years old. In June 2006 I was diagnosed with scoliosis because my pediatrician had concerns about my spine. The x-rays showed that I had a pretty big curve starting in the thoracic section of my spine. My family and I were shocked at seeing how large the curve was and how it had gotten so bad without us being aware. I then had to wear a brace that I was very upset about being in all day. I was in middle school when this was all occurring and it was very tough because I felt that everyone was now looking at me like a different person. The physical pain of the scoliosis was hard, and the emotional pain was even harder. In 2008, My Doctor, Baron Lonner, decided along with my family and me, that the curvature was so severe that I required surgery. This was a scary thought because I had never had surgery before. After the surgery I experienced a lot of pain, even though this was normal, I felt as though my back was being weighed down by a ton of bricks. Within about 2 weeks I was able move more and feel more comfortable within my body. Two years have passed and I am able to do everything I was doing before, but without the pain. If I hadn’t gotten this surgery I don’t even want to know what would have happened. Overall this has been one of the best decisions I have ever made and now I don’t have to wonder “what if?” I would love to thank Dr. Lonner for always being available and so supportive throughout this entire experience.

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Jamie

My name is Jaimie and I am currently 20 years old. I was diagnosed with scoliosis at age fourteen in the middle of eigth grade. When I first found out the news while sitting in the doctor’s office, I was devastated, heartbroken, and confused. I wasn’t even sure what scoliosis was, all I knew was that I had a severe case and surgery was necessary to prevent life-threatening complications later in life.

The first thing that came to mind was “How am I going to play soccer?” Soccer has been my life since I was four years old, and knowing I had to give it up for a year to receive surgery to straighten my spine was something I could not comprehend. But after much needed support from my family and doctors, I knew the surgery was something I had to do for myself to live a healthy life. Thinking about the surgery, I was scared with so many endless thoughts running through my head, but once I met Dr. Newton at Children’s Hospital, I realized I had one of the top doctors in the world taking care of me. Knowing I had the best, I was more calm and relaxed.

Looking back to those dreaded days before surgery, I could not be happier with my decision to follow through with the surgery. My results are phenomenal and I am more satisfied with my self-image and appearance now after the surgery than before. I am so thankful for the constant support I received from my family, friends, soccer team, and most importantly my doctors who performed such an extraordinary surgery. Support and self-determination are the two most significant aspects that pushed me through the surgery and also the recovery process. I had such a strong will to spend continuous hours in physical therapy to get back to playing soccer the second I received permission. I played soccer after six months when the normal recovery period is one year, I ran again before the usual time period, and experienced so much more because of the motivation that surrounded me. I had such a positive experience with all I encountered through the process. I am stronger now than ever before. I would not change one day from before or after the surgery because it has made me who I am today.

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