Despite affecting up to 9 million people in the United States, knowledge about scoliosis among the general public is still relatively limited. Many of my friends and family members didn't know about scoliosis until I was diagnosed, and I still find myself explaining my condition to people every day. In an attempt to increase scoliosis awareness and combat the stigma associated with physical disabilities, I entered Lime Connect's "In The Limelight" Video Contest. I am extremely grateful to have been selected as the People's Choice winner, and I am so proud to be putting scoliosis in the limelight. Feel free to give my video a watch—I hope it inspires you to share your story as well!
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While I was in the process of sharing my blog with several international scoliosis support groups, I received an email from an wonderful woman named Megan Glahn. Ms. Glahn is the founder of Scolios-us, a web-based platform intended to empower scoliosis patients with the tools and resources they need to be successful bracers. She earned her Master's degree from Baylor College of Medicine's Orthotics and Prosthetics program and currently works as a Certified Orthotist, specializing in scoliosis bracing. I asked Ms. Glahn for the story behind Scolios-us and her perspective as a medical professional; her response is below. I have always loved working with the adolescent population. I grew up as a competitive gymnast, and at the ripe old age of 16, I retired and began coaching. I coached for the next six years and worked with girls ranging from ages 4 to 16. I watched these girls experience all of the struggles that accompany growing up, so I was immediately drawn to scoliosis bracing while attending Baylor College of Medicine’s Orthotics and Prosthetics program.
Our curriculum was set up so that spinal orthotics was our first major orthotics class. After spending a few weeks learning about bracing for spinal fractures, low back pain, etc., we reached our scoliosis lecture. The first thing that stood out to me about scoliosis was the word “idiopathic.” By definition, idiopathic means of unknown cause. With the majority of scoliosis cases being idiopathic, the question arose is my mind about why scoliosis is so difficult to figure out. The next thing that stood out to me was perhaps more perplexing. We learned that scoli kids and teens should wear their braces for 23 hours a day. It was mentioned nonchalantly in our lecture, as if it were just the fact of the situation. Looking back, that day may be the most influential day of my life because that lecture single-handedly inspired me to purse scoliosis as a specialty. The wheels began turning in my head, and they haven’t stopped since – only gotten faster. Adolescence is hard. Adolescence wrapped in a giant piece of plastic is even more difficult. Although Dr. Seuss has a point when he asks, “Why fit in when you were born to stand out?”, standing out can be difficult when you are standing out because of something you did not willingly choose. So what? I began my research and found that while there are wonderful organizations, companies, and scoliosis warriors fighting to help scoli kids and teens feel supported along their scoliosis journey, most healthcare providers are unaware of these resources and do not actively recommend them. One study reported that “only 5% of those with scoliosis declared that they had opportunities to discuss their feelings and problems with health professionals, while 90% of them declared that they wanted to have more opportunities to do this.”1 The result is scoli kids and teens feeling isolated by their experiences. As an effort to bridge the gap between providers and patients, I began Scolios-us. Scolios-us is a web-based platform intended to empower scoliosis patients with the tools and they need to be successful brace-wearers. As a healthcare provider myself, I know it can be difficult to stay up-to-date with the ever-changing resources available for the many patient populations we treat. Scolios-us was created to do just that for the scoliosis patient population. We find the latest and greatest websites, blog pages, organization, Facebook groups, and companies that are fighting to support scoliosis kids and teens and put all of their websites onto one page. As a result, physicians, orthotists, physical therapists, chiropractors, and other healthcare providers are able to recommend one resource and know that patients can find their way to the scoliosis support that suites their specific wants and needs. The deeper I dive into scoliosis, the more I realize how much there is to learn. The world of scoliosis is incredibly complex, both biomechanically and emotionally. I am so grateful to have been given the opportunity to work with some of the brightest minds in scoliosis bracing while completing my clinical residency at Baylor College of Medicine. There is much to be learned, but as long as the wheels keep turning, we’ll get there. Resources 1. Sapountzi‐Krepia, DS, Valavanis J, Panteleakis GP, et al. Perceptions of body image, happiness and satisfaction in adolescents wearing a Boston brace for scoliosis treatment. J Adv Nurs. 2001;35(5):683-690. I would like to thank Ms. Megan Glahn for her time and support. Her breath of knowledge regarding scoliosis is astounding, and her unwavering devotion to helping others is extremely evident. Please check out Scolios-us by clicking the button below; it's an amazing resource for anyone battling scoliosis. When I was first diagnosed with scoliosis, I was told that there was nothing I could do to reduce the curvature of my spine. However, after extensive research, my mom and I discovered Schroth physical therapy, a method of physical therapy designed specifically to combat the effects of scoliosis. Although my doctors were skeptical regarding its effectiveness, I was willing to try anything to help my back. From then on, my family and I drove an hour away to Motion Physical Therapy every Friday. It was one of the only providers of Schroth therapy in the Houston area, but our weekly commute was worth it. Here, I worked closely with my physical therapist, Larry Hixon. He led me through several exercises that were designed to strengthen my core and revert my curve; without his support and guidance, my scoliosis journey would not be the same. I had the chance to interview Mr. Hixon. Below is his response to several questions about Schroth physical therapy.
I would like to thank Mr. Larry Hixon for his time and knowledge. His involvement in my case was monumental in reducing my curvature and increasing my confidence, and I highly encourage you to look into Schroth therapy if you have been diagnosed with scoliosis. Although my curve was not severe enough for surgery, my friend Emma's 60 degree curve made her a candidate for spinal fusion surgery. She, just like me, was diagnosed with a mild curve and was told that it was no big deal, to monitor it, and to go home. Unlike me, however, Emma's curve drastically worsened during the time of observation, and she was forced to turn to surgery. I had the chance to interview her about her experience; below is her account of her journey with scoliosis, surgery, and the road to recovery. I was diagnosed with scoliosis when I was 11 years old. I had a 18 degree curve and was told by the doctor that it was common and not to worry about it. My mom asked if there was anything we could do to prevent it from getting worse, but they said they would monitor it and let us know if we needed to take action. The following year, I noticed a dull pain in my back whenever I came home from school and had an x-ray done, but the doctor didn’t let us know if the curve worsened, so we assumed everything was okay. However, when I was 13, the doctor said my curve was at 45 degrees and that I needed surgery. Prior to my surgery, I went to see a surgeon who recommended various tests and appointments to check my blood, vision, and other things that could potentially affect how the operation went. We also saw the surgeon for pre-op appointments where he took more x-rays to determine where the best place would be to insert the rods. Right before the surgery, my curve progressed to around 60 degrees. I remember being super doubtful before the surgery and wondering if the process was even worth the money and the risk, but at that point the back pain I was experiencing was so great that I was willing to do anything to make it go away.
Immediately following the surgery, I was still in a lot of pain because of nerve/muscle damage from the incision, so I was under a lot of painkillers. After the surgery, I felt helpless since I couldn’t really do anything on my own. While I was still in the hospital, I had to be turned every so often when I was lying down since I wasn’t allowed to lie flat on my back, and every time I moved, I was scared that I would mess something up. The nurses also helped me to walk around the floor at least twice a day to help speed up the recovery process. Additionally, I was on pain medication which helped with the pain (obviously), but also took away my appetite. I stopped medication when I went home, about a week after the operation, and it took me about 3 weeks to actually feel better. I had to go back to school after a month, but because my back was still recovering, I wasn’t allowed to carry more than 10 pounds at a time. Now, it has been a year and a half and I’m pretty much back to normal- I’m pretty much pain free, and can do basically everything I could do before the surgery. Even though the whole process was kind of terrifying, I would definitely do it again because, in the end, it dramatically decreased the pain I was in as well as benefited my state of being. Grant Wood, MS, CPO is the co-founder of Align Clinic in San Mateo, California and has over 25 years of experience in the areas of prosthetic and orthotic patient care, management, product development, and scientific research. In addition to being an active presenter, researcher, and winner of awards in prosthetics and orthotics, he is also a specialist in scoliosis bracing with the Cheneau brace and the Rigo-Cheneau braces; he has the unique qualification of having trained and mentored with Dr. Rigo and Dr. Cheneau since 1995. Since then, Mr. Wood has worked on numerous research publications, studies and workshops on the Cheneau and Cheneau Rigo braces, and he has gone on to create his own brace type: the WCR Brace®.
Mr. Wood created a brace for me in November 2016 and another in June 2018; I continue to wear my WCR Brace today. I had the privilege of interviewing him about both scoliosis in general and about the WCR Brace.
I would like to thank Grant Wood for giving me the gifts of his time, knowledge, and experience. I hope this information can help you in your search for an effective treatment that is best suited for you. See you soon for another blog post! My mom first enrolled me in dance classes at the age of three. For the next 11 years, I experimented with different styles of dance, from tap to contemporary to jazz, but I always found the the most joy in ballet. I was committed to my sport, dancing for hours several days a week, advancing from simple steps to entire variations en pointe. 11 years at my ballet studio taught me not only the art of ballet, but also discipline, teamwork, leadership, courage, and countless other fundamental aspects of my character. With the knowledge I had gained, I left my studio; I was soon to enter high school and join my school's dance team and wanted to fully dedicate my time to schoolwork and the team. That year, I woke up early every morning to go to practice. I would take off my back brace in the locker room, store it in my locker as I danced that day, and strap it back on for the rest of the school day. At first, I was hesitant to reveal my brace to my teammates out of shame and embarrassment, but my peers welcomed and accepted me regardless of my scoliosis. When I danced, I never felt pain due to my back; however, I was occasionally limited by stiffness or a loss of flexibility. Nonetheless, I didn't let these minimal obstacles prevent me from doing what I loved. Although I left my dance studio, I was fortunate enough to develop lasting friendships while I was there. I interviewed one of my friends, Lisa, who still dances there and knows several dancers who have been diagnosed with scoliosis at the studio. Below is what she had to say about dancing with scoliosis. In dance, mobility and healthy bodies are super important in order for dancers to perform to the best of their ability. Injuries can seriously set back dancers as they make their recovery, but a disease such as scoliosis affects a dancer throughout their entire dance career. Dance requires large amounts of back strength and flexibility, and almost every step in dance requires use of your back. This proves to be a real struggle for dancers with scoliosis because it can make almost every dance step painful or uncomfortable. Luckily through perseverance and treatments, I've seen many people succeed in dance despite having scoliosis. Scoliosis is a serious obstacle some dancers have to face, yet it is not impossible to overcome.
Steps such as an arabesque require dancers to lift their legs high to create what is known in the dance world as a "good line." Low arabesques are unacceptable, and dancers with scoliosis may be forced to drop their legs lower due to physical limitations. Another important obstacle dancers with scoliosis experience is maintaining proper alignment. My friend with scoliosis mentioned to me that it's difficult for her to keep her alignment during different positions while dancing because of her scoliosis. However, she has learned to pay special attention to her alignment and better understand her body's tendency to lean certain ways because of her back and fix them. Dancers with scoliosis adapt to their condition by paying attention to their body, learning from it, and developing coping strategies for dancing. As Lisa described, there are undoubtedly several obstacles that dancers or any athletes face when they are diagnosed with scoliosis. The effect of scoliosis on one's sport may vary depending on the severity of the individual's condition, but these negative effects and obstacles can be defeated with perseverance and support from one's peers. Don't let your diagnosis determine your future; your fate is in your own hands. Hi, and welcome to the Blog tab of my website, Back to Blog! This page will be a place for me to talk about my personal experience with scoliosis, from confidence tips to fashion advice with a back brace. In addition, posts on this blog will include perspectives other than my own, with posts from friends of mine who have had scoliosis surgery and medical professionals who have extensive experience in treating scoliosis. While the other tabs of this website were created to inform you about symptoms and treatment options, this tab is intended to inspire. I hope to help others gain confidence and navigate the rough road of scoliosis based on what I have gone through so far.
Why did I create this blog? I have been a Girl Scout since I was in kindergarten, and the program has instilled in me a heart for service and a desire to help others. As an Ambassador, I am now working on my Gold Award, the highest award that a Girl Scout can earn; when coming up with a project idea for this award, I saw this blog as the perfect opportunity to combine the values scouting has taught me with the knowledge and experience I have gained through my struggles with scoliosis. Back to Blog is the main part of my Gold Award, and through it I hope to not only impact those with scoliosis but eliminate the general stigma around talking about one's disease or disability. Prior to my freshman year of high school, I was diagnosed with scoliosis, and this sudden news in addition to the nerves of entering high school took a toll on my self esteem. I felt alone in my experiences and uncomfortable in my own body. My goal with this blog is to inform and inspire others with scoliosis as well as act as a sister to those who have no one to turn to. Thanks for stopping by; I can't wait for the blog posts to come! In the meantime, check out the other pages on Back to Blog to learn more about scoliosis and my story. See you soon! |
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