Main Stories 2018 – StraightForward
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TARYN KASCHOCK RUSSELL
ARTIST | EDUCATOR | SCOLIOSIS ADVOCATE | ASSOCIATE DIRECTOR OF THE JUILLIARD DANCE DIVISION
At age 11 Taryn Kaschock Russell first heard the term "Adolescent Idiopathic Scoliosis" in reference to her spine. A physical education teacher sent her home with a note asking her parents to take her to her pediatrician after noticing a slight difference in Taryn's ribcage when she bent over to touch her toes during the standard Adam's Test in gym class. That scoliosis screening revealed an "S" shaped spine 35 degrees to the right in her thoracic spine and 18 degrees to the left in her lumbar spine. The orthopedic specialist she was referred to insisted that the best way forward would be daily treatment consisting of 23 hours in a brace; her other option was surgical fusion. It was on this day that her parents asked her a very important question: whether or not she still wanted to pursue her dream of becoming a professional dancer.
"Scoliosis has shown me that each of us is beautiful in our differences"
At the age of 18 Taryn was contracted in the Joffrey Ballet. Before this, at age 14, when her growth plate was last measured her thoracic curvature measured 54 degrees while her lumbar curvature measured 38 degrees. For 3 years after her diagnosis, Taryn's parents worked tirelessly to facilitate her dream. They wrote letters to anyone who could offer more information on their daughter's condition, and how to make it possible for a young girl with scoliosis to make it in the world of professional dance. Every 4 months she was x-rayed, every night for 3 years she slept with a biofeedback machine, and worked on her alignment in a dance studio 7 days a week.
After joining a ballet company the obstacles continued to come in several different ways; from the language used to describe her to overcoming the fear instilled in her regarding the possibility of motherhood. With leaps and bounds she overcame each hurdle, and after holding her first child in her arms that fear was shattered. Being a mother of 2 is her greatest achievement to date. She decided to shift her perspective on her circumstances and how she felt about life with scoliosis by refusing to let it all define her. She used it all as fuel for a fight, odds to defy, and statistics to tear down.
"I want to use my story to help others find that beauty in all of our differences – and then to spread that found joy, acceptance and appreciation to others"
Taryn would like for each individual to be considered holistically in their treatment options that not only the condition is observed but that specialists also be sensitive to the quality of life during and post-treatment. She would also like to see changes in the language used to explain the condition to adolescents; that doctors be more tactful in speaking to young boys and girls about their bodies being that they are still quite impressionable. In her early adulthood Taryn felt pride when others mentioned they didn't notice her scoliosis, now she wants to highlight her scoliosis. She feels scoliosis only seemed like an obstacle at first but that it has really been a lesson in how high she could climb and that all she ever had to do was look up and start.
BUKI ELEGBEDE
TV HOST | JOURNALIST | FOUNDER OF ONCE UPON A DREAM PRODUCTIONS
Buki Elegbede was diagnosed with scoliosis at the age of 15. Confused as to what was happening to his body, it would take Buki a few years before truly understanding why his physique was rapidly changing the way it did. After conducting substantial self-research, Buki slowly started to understand why his body didn't look like the other kids.
"The one thing I did know was I would never be the same again."
Not only did Buki feel insecure and different from everyone else at his school, but he also felt alienated as he was reminded everyday of just how much he did not have: money, access, friends and connections.
Although Buki underwent surgery 15 years ago, the journey has not been a smooth one. Keeping a positive attitude towards his body image has not been easy due to Buki having to spend a lot of time in front of the camera in pursuit of his passion and dreams. Having the true heart of a warrior, Buki doesn't allow anything to come in between his goals and aspirations, and truly believes that the diagnosis and surgery have made him even stronger and have given him the courage to survive in the media industry.
"The hardest obstacle I've had to overcome is letting go of what could have been, should have been, and would have been without this diagnosis."
Despite the uphill battle with scoliosis, nothing has stopped Buki from thriving in life and doing what he loves most. Currently, Buki runs his own production company titled, "Once Upon A Dream". He produces his own content, which has won many awards as well as winning the "Create Cooking Challenge". Buki continues to tirelessly pursue owning and running his own future media empire.
"Everything you are going through today is going to make you the person you were destined to be tomorrow."
Today Buki makes sure he remains active and sharp by working out several times a week, as well as making room for meditation and prayers every single day. These routines keep him strong both mentally and physically, as he reminds himself daily to not let scoliosis limit anything he strives for. Alongside his mental and physical practices, Buki makes sure there is room for both cooking and baking. In this time he produces his own 10-episode cooking series, "Baked By Buki".
Buki hopes that his fight through scoliosis can show others that only the sky is the limit. He sees himself advocating for scoliosis awareness the best way he knows how to, which is through creating content and telling incredible stories to put faces to the diagnosis.
"What I have come to learn and what I hope others will learn is that their condition is not the sum total of who they are. It's just a small part of the incredible, strong, magnanimous individuals they were destined to be.
As a charismatic young man, Buki's advice to others who have been diagnosed is to take a deep breath. Only after that should they do as much research as possible. Buki believes that this will not only let you take control over your condition, but it will properly prepare and ready you for the doctor's office when it comes time to talk about all the different treatments.
"This diagnosis does not and will not define them or their lives. Everything they want to do and need to do, they still can do."
KARMAY NGAI
MODEL | ENVIRONMENTALIST | FOUNDER OF PATCH LOVE UNIVERSE AND PROJECT GONE FOR GOOD
Karmay was diagnosed with Scoliosis at age 28. She felt discouraged that her condition had been unknown for too long. Faced with the fact that she would have to live with this condition for the rest of her life, she was discouraged to know that there was no cure and that things may only worsen.
"You are not alone. A change of Habit will help and there is a huge community to support you."
After so many life changes as a result of her condition, Karmay realized that being transparent about the condition with the individuals that she spent her time with helped her to share the weight, both physically and mentally.
Karmay found it important to empathize on the importance of daily exercising routines and yearly check-ups, especially during her development stage.
Scoliosis affected her life in a major way, and changed the way she saw herself. It was terrifying for her to wake up every morning, knowing that once she moved, the pain would arise. Over coming that mindset for her wasn't easy. And as a result, she tried connecting with herself and her purpose, and when the pain was overbearing, she focused on gratitude. Counting her blessings, she remained positive that her daily routines would help over time.
Her greatest achievement to date is having the ability to self-sustain her standard of living, traveling the world, and the capability to embrace all situations in life.
"Physically, I enjoy swimming. A lot. On the good days when my back pain is super mild, I go for a dip. It is the best feeling ever to be surrounded by water."
Today, Karmay stays present and is not overtaken by fear. Mental development is very important to her, so she utilizes her time and listens to audiobooks, to gain new insight.
Karmay hopes that her story inspires others to live an amazing life and to utilize their intuition as their best guide. She believes in community forums, where individuals can share their stories.
One of Karmay's many goals as a Scoliosis advocate is see changes in the treatment of spine deformity. She would like for there to be a universal, direct explanation on the varying treatment methods and preferences. She advocates for Insurance options on all kinds of treatments, from holistic fluid transfusions to traditional methods.
JOE O'BRIEN
BUSINESS LEADER | HEALTHCARE EDUCATOR | PATIENT ADVOCATE | RESEARCHER | CO-FOUNDER OF SOSORT | FOUNDER OF SMARTT INSTITUTE | PRESIDENT AND CEO OF NATIONAL SCOLIOSIS FOUNDATION
Joe O'Brien was a junior in high school when he was diagnosed with scoliosis; at the time he was 15 years old. Initially, he felt alone, afraid, and as a fraction of himself; still, he viewed his entrance into the hospital as an adventure. Little did he know the treatment would ail him more than knowledge of his condition. He spent 30 days on a stretching rack, had 2 spinal surgeries, and spent almost a year in bed with a body cast spanning from his head to his hips. Today he has undergone a total of 6 surgeries, has worked with the National Scoliosis Foundation, and works to transform his experiences so that they can positively transform the lives of others.
"For more than 40 years my life has been one continuous scoliosis awareness campaign advocating for early detection and treatment to help improve the lives of as many people as I can"
Each of Joe's surgeries proved to be personal obstacles for him. Through these he has gotten married and has built a family. Hearing that 3 of his children have scoliosis proved to be obstacles he was much more sensitive to than each of his recoveries. He hopes to see advancement in non-fusion technologies to help the spine better maintain its natural function and avoid progressive deformity issues. In the long term, he hopes to see safe and effective preventative biopharmaceutical solutions replace current orthopedic devices.
In the past 4 decades Joe has accomplished a great deal. He created the "June is Scoliosis Awareness" campaign, has travelled 3,800 miles across 13 states from San Francisco to Boston and held 33 press conferences/community meetings along the way. He did not go this alone, his wife supported this endeavor by coordinating his lodging and speaking engagements from home. At the end of this journey he presented SRS with the largest individual donation at that time. $45,000 was directed to supporting Dr. Nancy Miller of Johns Hopkins Hospital to aid in her genetic research. This initiative also allowed him to recruit 200 families with multi-affected members resulting in 1,200 participants for Dr. Millers study.
"Do not be afraid. Let it go. I am with you. Free yourself and rise."
Joe would like all those recently diagnosed to know that they are not alone, there is hope and help along the way. Knowledge of scoliosis is key and he recommends learning as much as possible about the condition and the option available so that one can choose the path that will get them to their dreams. Your experience and determination will guide you to live an enriched life where you can grow to help others as well. Today, Joe loves to spend time with his family and also invests time in scoliosis advocacy. Living and active lifestyle is also a daily hobby of his; he walks 1-2 hours a day while praying and meditating. Happily, he describes himself as a passionate and caring scoliosis advocate who is joyful in hope, patient in affliction, and faithful in prayer.
CATHERINE ROSS
MEDICAL DEVICE ENGINEER | MANAGER
Catherine's dream was to enter the world of professional dance. Early in her life she was diagnosed with scoliosis and for years hung from a pull-up bar in hopes that this would correct the curvature of her spine. This did not work, when she was in her very early teens it was discovered that her scoliosis was only progressing. It was at this point, entering high school that she began to wear a back brace. For her freshman and sophomore years she changed her style in order to hide her brace. She wore baggy tops and jeans in order to conceal her treatment. In the year 2000 she had her first spinal fusion surgery from T4 to L3, only to have a second surgery soon after, and a third just months after the second. These three consecutive surgeries during her junior year in high school were not this teens biggest challenge, it was the fact that her dancing career was in grave danger.
"I had my heart set on becoming a professional dancer and was nervous about what this might mean for my future in dance."
Today, she recognizes she has had many achievements, the greatest of them all being her newfound ability to create a positive situation from a negative one. This talent came about when she realized she had to put an end to her dream of professional dancing. She was able to get past that and turn her disappointment into fuel that has launched her into her fulfilling career today. Now, this is not to say that there was an easy transition – hardly any transitions are smooth. It took a highly skilled calculus teacher noticing her potential to begin shifting her journey away from dance and toward engineering. She chose Virginia Tech as her university of choice where she fell in love with biomedical engineering.
From that moment on she was determined to become a biomedical engineer and help others suffering in any way as a result of scoliosis. Though the pain in her back increased throughout college she opted to forego a fourth surgery in order to obtain her degree in four years like her classmates. She gained a research position with a professor working on new techniques in rod bending for future surgeries, and upon graduation began work with K2M, a company that is passionate about the treatment of spinal deformities.
"Once I got involved in the medical device industry, I realized that my scoliosis gave me a unique perspective and insight into the conditions I was helping to treat."
Her fourth surgery was performed by a surgeon she met through her work at K2M she developed a bond with the doctor who she was entrusting her spine to and further trusted the surgical process he recommended because she had worked on some of the components in the innovative technique herself. Looking back, she would want her younger self to know that everything turns out for the best in the end. She would ask that her younger self hold on to hope, even though she remembers clearly the times when she felt hopeless after multiple failed surgeries. Catherine can ask this of her self today because thanks to the advanced technique used for her surgery she now lives relatively pain free. Today, she is a strong and passionate woman who is dedicated to improving the treatment of spinal deformities and supporting women to pursue careers in STEM fields.
WIDALYS PAREDES
Widalys Paredes was diagnosed with Scoliosis at age 12. Her first thought was a fearful one, not knowing the severity of Scoliosis, and hoping that she would not have to undergo surgery on her spine, as she knew that the recovery process was not easy.
"Someone as young as I am can have Scoliosis, live with this condition, and still be themselves."
After having her world turn upside down from the diagnosis, the hardest obstacle that Widalay had to overcome was quitting Gymnastics. She was told to be careful at all times, especially when doing little things.
Despite all of that, she loves playing with babies, but with her mobility being affected, many individuals would not give her the opportunity. She wore a brace, which at times was mentally and physically challenging for her, as there were times that the brace was not comfortable.
"I like Gymnastics, drawing, painting, and Nail Art."
Today, Widalay stays active through her many hobbies, utilized to make her spine feel great.
Her biggest achievement to date is her ability to wear her brace all day, as she never thought that she would be able to do it.
Widalay hopes that her story makes all individuals feel motivated and inspired. She also advises people affected by Scoliosis to not slouch, and encouraged them that things will always get better.
RUMEYSA GELGI
GUINNESS WORLD RECORDS HOLDER
At just two weeks old Rumeysa Gelgi was diagnosed with congenital scoliosis. It was caused by Weaver Syndrome, a genetic disorder she was born with. For many years she didn't realize she had scoliosis as it formed part of her life as far back as she can remember, for 17 years her days consisted of sitting for a maximum of 20 minutes and spending a majority of her time lying down. This impacted her social life and affected her self-esteem, causing to shy away from potential friends and photographs. At the age of 17 she underwent an operation for the 65-degree curvature of her spine.
"Scoliosis is a major fact in my life, so I feel happy and proud to be able to take part in spreading awareness – hopefully I can do much more in the future"
The hardest obstacle she has had to overcome has been surgery; it was a major turning point in her life. Today, Rumeysa holds the Guinness World Record for tallest female under the age of 18 at 6'9"! It is the achievement she is most proud of though it is not all she has done post-surgery. She wrote a blog post after her first year of surgery, this post still garners feedback from many affected by scoliosis. This has shown her the importance of connecting with others who share this unique experience. Her mission now is to spread a message that no matter the challenges one can pull through.
"I'm an extraordinary young woman, who struggles in life, dreams for the future, works hard to achieve her goals, loves books, and smiles always"
Aside from sharing her story online, reading crime and mystery novels are her favorite hobbies. She also loves spending quality time with her family, and traveling all over the country. There is much more confidence in her now and she aims to transmit that confidence to others that have lived through similar circumstances. If she could, she'd tell her younger self to socialize more, to spend time cultivating friendships, and to hold her head up high because though she wasn't yet aware, she has a very strong soul.
She'd like those who were recently diagnosed to know that self-motivation will be key, that believing in yourself is paramount, and that you shouldn't be afraid of understanding scoliosis and undergoing proper treatment. She'd add that physical exercise is a great help, and something she wished she would've been able to do as well.
Rumeysa looks forward to the day when treatments for scoliosis aren't identified by scarring and pain. Her experiences have both marked her and propelled her to overcome. As she looks back she is able to see just how strong she is at this point in her journey, strength she wishes all to experience for as well.