Lindsay Ellingson was diagnosed with Scoliosis at age 11. After her gymnastics coach noticed her uneven lower back muscles in class one day, X-rays revealed a thoracic curve from T5 – T11 measuring 25 degrees and a thoracolumbar curve from T12 to L4 measuring 35 degrees. Lindsay was diagnosed with idiopathic Scoliosis (spine shaped like an S).She spent the next two years in a brace for 23.5 hours a day before undergoing spinal fusion surgery at age 13.
”After my operation I felt a new inner power that pushed me to set high goals for myself, I am constantly testing and expanding the boundaries of my comfort zone.”
After having her world turned upside down from the diagnosis, bracing, and surgery, Lindsay went on to graduate in the top 10 of her high school class, was then accepted into the University of California San Diego, and made the competitive dance team at UCSD. She then started her modeling career in Paris, walked in hundreds of couture and fashion shows, was a Victoria’s Secret Angel and carried many of the heaviest wings. In addition to her professional success as a model, she is now an entrepreneur and Co-founder of a line of cosmetics sold at QVC and Sephora and has even biked 50 miles for cancer research.
Despite all of that, she believes her greatest achievement was the mental and physical strength it took to get through bracing, spinal fusion surgery and recovery.
“I wouldn’t be the woman I am today without such a challenge early in my life. I have been a powerhouse of determination and have worked relentlessly to achieve my dreams with my husband and dog by my side.”
Today, Lindsay stays active through Pilates and hot yoga to make her spine feel great.
Lindsay hopes that her story makes all children feel supported and hopeful. She believes it is important for them to realize that Scoliosis is just a bump in the road and that they will go on to do amazing things in their lives.
One of Lindsay’s many goals as a Scoliosis advocate is for states to screen for Scoliosis at the appropriate age. In many states, like the state of California where Lindsay grew up, budget cuts have eliminated Scoliosis screenings in school. Lindsay would like to educate parents about Scoliosis and find a way to teach them how to screen their own children if their states don’t offer it. If Scoliosis is caught early enough, spinal fusion surgery may be avoided.
Additionally, she would love to see fusionless surgical options that work for all Scoliosis cases and see a reduction in the hours per day doctors recommend patients to wear a back brace as these can reduce activities and social interaction and limit a child’s youthfulness.
As a Scoliosis warrior and proud of the scar on her back, the best advice Lindsay offers children is to not hide from Scoliosis, to find support groups, stay active and positive and surround yourself with supportive family, friends and other Scoliosis patients as well as be diligent in wearing a back brace.
Paige went in for her annual checkup and her doctor noticed she had a slight curvature of her spine when she bent over to touch her toes. She was a freshman in high school at the time. She immediately sought out an orthopaedic surgeon for further analysis and x-rays. That same day, she was diagnosed with scoliosis and it was suggested she consider surgery for correction.
Paige recalls feeling frightened upon hearing the doctor discuss metal rods to help straighten her spine. She thought her dreams of becoming a professional dancer had ended in that office. However, Paige’s parents sought other opinions and researched what options were available before proceeding with surgery. To manage her pain temporarily throughout high school, Paige found relief from non-operative care and by wearing a brace when she was not dancing. To this day, she has not received scoliosis surgery but enjoys a stable and responsive spine 14 years later.
“I should not be able to do what I do with my body, yet I continue to prove statistics wrong every day.”
Paige hopes that by sharing her story, she inspires dancers and all women that anything is possible. To those who receive a scoliosis diagnosis, she recommends they research the condition. Each patient is different and consequently can have different management and treatment strategies. Most cases of spine deformity do not require surgery. She feels early detection played a part in avoiding surgery for her. Though there are many cases of people who have had successful surgeries and continued with active lives, she stands, en pointe, as an example of someone who is living a full life and career as a dancer. Paige would like to highlight that many individuals with spinal deformity can be and are treated non-operatively.
”Each curvature is different and requires a specific regimen.”
To others with scoliosis, this professional dancer offers the advice of determining what works best for their body as well as staying current with x-rays. Paige strongly believes that knowledge of the condition and of one’s body will allow patients to rise above any challenges brought on by scoliosis.
Marth Hunt was diagnosed with Scoliosis at age 14. At the time, she felt like her body was betraying her, and lonely because she didn’t know anyone else going through it.
”Scoliosis didn’t stop me from succeeding in life and in my career, and I would like others to emulate that mentality.”
Scoliosis made it harder for Martha to have full body confidence in a career path where displaying her body is, for the most part, non-negotiable. She continues to strengthen her core and back by remaining active. Though her spinal fusion did not completely correct her curvature, she has remained disciplined and determined to stay strong.
Martha hopes that science continues to further safer and effective treatments. Spinal fusions can be high risk, tethering is a hot topic, and braces can be frustrating for patients. Martha feels scoliosis is often overlooked and many people do not realize how much it affects patients and their support systems.
“We need to campaign for parents, doctors, and schools to check their kids starting from a young age to their adolescent years.”
This ambitious, goofy, hard-working, loyal, and sincere model enjoys writing in her free time, hanging out with her dog outdoors, surfing, dancing, and being active. Along with becoming a Victoria’s Secret Angel, Martha’s biggest achievement is working with young girls who have scoliosis by empowering them and helping to spread awareness.
She works hard to spread awareness in her daily life, including advocating for NIH-funding on Capital Hill for spine deformity research. She has also organized events for scoliosis support groups and co-designed necklaces to support scoliosis organizations she works with.
Martha encourages younger individuals to stay informed of all treatment options. Her message is to stay on top of their condition because the spine moves quicker than one would think. And finally, she says, “Life goes on.”
Nancy was not aware of her scoliosis condition until eight years ago – a year before undergoing spinal surgery. From childhood through adulthood she was only aware there was a physical problem, but per societal norms, it was not discussed with her at the time by her parents or her doctors.
Growing up she felt the stigma of being excluded from group activities in school as well as the physical pain that can come with spinal deformities. While untreated, Nancy’s greatest pain came in child bearing and rearing years. At the time, she found it difficult to complete a day chasing after her two-year-old without experiencing incapacitating discomfort. It was not until 35 years later that she finally found some relief, by having surgery. Nancy now walks straighter without complications and has not experienced any back pain since her surgery at 67 years old.
”I no longer was responsible for the pain I had been suffering and I no longer had to think the pain was my imagination.”
Nancy hopes her story helps other mature individuals, who have lived in a generation or situation as she did, to never give up on resolving their scoliosis pain. She recommends that both younger and older generations ask questions of doctors and other patients to better understand the condition and feel assured in the availability of help. With more public promotion of scoliosis and awareness of support groups for all ages, she knows lives would be changed positively.
“My greatest achievement was and continues to be the ability to walk with confidence and endurance and to be predictably active again with family and friends.”
The hardest obstacle Nancy overcame was herself and her feelings. She had to realize that she was not at fault for her condition and that coming to terms with it would be more helpful to her and even potentially useful for others. Her advice to individuals just diagnosed with scoliosis or any other spine deformity is to have confidence in themselves and their feelings; to combat personal fear or physical limitations by being an active patient; and to ask questions of knowledgeable people and learn about their condition. Expect to live life fully, she adds.
This retired schoolteacher loves to travel and continue to learn about history, people, and the environment. She finds joy in exchanging stories with new people, appreciating art, painting, gardening and walking – something that has become a reality for her now.
Nancy feels forever grateful to the honest physician who was upfront with her about the diagnosis for a person of her age as well as his extreme kindness, dedication, and surgical skills. She feels blessed.
Noslin was diagnosed when he was six years old. He received spinal surgery at the age of seven, but does not remember too much of that time. He does however recall the difficulty and challenges during recovery.
”We are not extraterrestrials.”
Noslin hopes his story encourages others to pursue their dreams and what they want to do in their lives without feeling that they are “different” and need to hide. He feels as normal as any other hyperactive kid that loves life.
Noslin wants to finish his schooling with good grades even though he is often distracted by the computer and building things in Minecraft.
Currently, he aspires to work in the fish tank industry. He enjoys watching Tanked on Animal Planet and is fascinated by how they build the corals for some of their designs. Noslin would like to focus on computer design so he can assist with dreaming up new designs for the company.
“I am the glory of my God. I am a miracle.”
He would like everyone with a spinal deformity to be happy the way they are and to follow their dreams even if they are hard to achieve. He also wants patients to ask as many questions as needed and to not worry too much as this happens to “special people only.”
Aya walked in to her home after school one day to a letter she had received explaining that she had scoliosis and needed to see a specialist. The letter was a direct result of what her physical education teacher had found during a school screening.
Upon reading the letter, Aya felt her heart stop and terror quickly setting in. She immediately hopped on the computer to research what this diagnosis meant and how it might affect her going forward. Aya did not find much in the way of education on the computer or her local library. She was not able to feel a sense of relief and instead was left with more questions. She finally connected with an orthopaedic doctor who informed her of her curvature and prescribed yearly monitoring of the curve since the condition did not physically affect Aya adversely. Because there was a lack of physical pain and Aya could still compete in sports, she and her family were in a state of denial about her condition and ignored the doctor’s monitoring strategy for years.
”Had I taken the numbers more seriously and started treatment for my abnormal curve earlier, there is a possibility that I could have avoided surgery.”
10 years after her initial diagnosis, Aya’s spine curvature measured 64 degrees. During this period, she avoided yearly checkups, ignored growing vocal concerns, and found herself limiting her self-expression from the fashions and styles she loved. She was told that if she continued to ignore the condition, the deformity could continue to worsen and begin to affect her internal organs and future pregnancies. This vocalization convinced her she needed to address her scoliosis.
Aya reports the hardest obstacle she has ever overcome was her first day post-surgery. After the effects of anesthesia wore off she woke up feeling like “roadkill on some deserted lonely highway.” Her ability to overcome the challenges she experienced during recovery resulted in having a high threshold for pain. Consequently, Aya feels she is not afraid of anything.
Post-surgery, Aya’s confidence soared. She felt proud of her new bionic figure and felt a powerful sense that anything was possible. For the first time, she wore clothes in her actual size since she did not have to accommodate or hide her wide torso. Aya stays strong and active through yoga, Pilates, and playing tennis. She is thankful her surgery allowed her to successfully experience three pregnancies without any back pain. During these pregnancies, she was able to exercise, walk around the city, and take the subway until the day before giving birth. Aya feels the blessings of her smooth births and healthy children have amplified her life and that she could not be happier with her decision to undergo surgery.
”These procedures are tried and true and I am living proof.”
Asked what advice she would offer her younger self, Aya says she would instruct herself to not to hide or feel embarrassment. Instead, she would demand herself to embrace any and all issues rather than cowering from imagined scary “what ifs” and unknowns. Aya finds it important that individuals seek advice, arm themselves with knowledge, and build a support network.
A very logical person is what Jamilia considers herself. However, when she was first diagnosed with scoliosis at the age of twelve, she felt confused and convinced herself she misinterpreted the entire diagnosis. As Jamilia’s curve grew over 110 degrees, she felt her self-esteem grow lower and lower. She responded by hiding her body with larger clothing and wearing her hair loose to hide her back.
“Keep your loved ones close, you’ll need them now more than ever.”
Jamilia feels it is easy to feel alone when living with scoliosis. She recognizes that the condition affects not only one’s physical but mental health. She would like everyone who has ever been affected by scoliosis, regardless of curve magnitude, to know they can overcome moments of low self-esteem by uplifting and supporting each other. Jamilia shares her experience with inquisitive individuals daily by further detailing her life pre and post-operation. It is a conversation she is always open to having to help spread awareness of the spinal condition.
After taking a hiatus during the peak of her battle with scoliosis, dancing provides respite for Jamilia. She also enjoys spending time with her family as she feels they bring peace, joy, and happiness when with them.
“I’d like to see more research go toward the study of spinal deformities, especially scoliosis.”
Scoliosis does not result from carrying heavy items, sports, poor posture, or minor leg length abnormalities. In more than 80% of scoliosis cases, a specific cause is not known. Jamilia hopes to see a day when the scientific community determines the cause of scoliosis.
When first diagnosed, Leah recalls feeling very alone – she did not know anyone else who wore a brace or even had scoliosis. She ultimately met three other female patients and invited them for discussion about bracing and how to fashionably style them. What she gained from that interaction was a sense of community.
She continued to meet with other girls with scoliosis the first Sunday of every month in her home. This group of women called themselves Curvy Girls and those meetings have expanded to become an international support network of girls.
”…It was what I like to call finding a new normal.”
When her curve continued to progress in spite of bracing, Leah underwent spinal fusion. During her recovery, she focused on healing physically, including learning how to rebalance her body. She worked to get back to dance classes and reclaim her spot on her varsity golf team. Establishing her new routine was emotionally taxing, but she ultimately found firmer footing with the help of friends, family, and trained professionals.
”If I didn’t have scoliosis, I know I wouldn’t be who I am today.”
Convinced her life would look incredibly different than how it is now, Leah understands the impact having scoliosis has had on the trajectory of her life. She credits her ability to overcome adversity to how she learned to cope with her condition. Initially she struggled emotionally and physically with having scoliosis but has strengthened herself and now takes pride in having inspired 90 support chapters in 35 states and 14 countries. Leah’s personal hopes for the treatment of spine deformity center around strengthening the communication between patient and support resources.
Leah advises young girls in the situation she once was to be more accepting of having scoliosis and wearing a brace. As an adolescent, she felt very negative about her spine but now feels if she had been less so, others would not have echoed her shameful thoughts. Now, Leah finds herself as an outgoing, outspoken, and freethinking person who welcomes new adventures and challenges.