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patient stories

Carina Imbrogno

My name is Carina Imbrogno and I would like to share and publish my miracle story with others to help inspire them and give them hope it’s one way of me paying it forward. 

 

My name is Carina Imbrogno and I was born in 1974 in Buenos Aires, Argentina to Italian immigrants. I was born with a rare genetic disorder called Ehlers-Danlos Syndrome kyphoscoliosis type, but it was not diagnosed until 2015. This illness caused me to have severe scoliosis kyphosis since the age of two. I am the youngest of eight children.  We were four girls and four boys.  My oldest sister died from Leukemia as a toddler.  I grew up with a very difficult father.  I realized years later that my father was always ashamed of me because of the way I looked. Growing up I was also bullied and teased by other kids due to my very prominent rib hump.  Having many surgeries and wearing orthopedic braces wasn’t easy!  

 

I began wearing orthopedic braces and body casts from the age 2 to the age of 11 and then again as an adult.  I had my first open back surgery at 10 years old.  My spine was collapsing so fast I was having trouble breathing.  The doctors explained to us that I needed emergency open back surgery because my ribs were collapsing on my lungs making it difficult to breathe.  I had a curve of 89 degrees and another curve of 56 degrees. Doctors explained to us that I have a deadly type of kyphoscoliosis and without surgery I would die.  I had surgery and had a rod put in to stop my spine from curving any further. 

 

Unfortunately, I had complications.  A few days after being sent home from the hospital I developed a very high fever.  I went to see the doctor and he discovered I had a massive infection from the surgery. I almost died from this infection which left me hospitalized for three months.  Fortunately, the infection finally healed but over time the rod that was put in as a child began giving me problems.  By the time I was 18 the rod had somehow moved out of place and doctors think it was causing my migraine headaches.  I finally had to go for another surgery to remove part of the rod.  My migraine headaches finally went away. However, I struggled with my severe and painful rib hump and was always fearful that I would never find anyone because of the way I looked.

 

In 1996 I was accepted to go to school at the Fashion Institute of Technology in New York City to study textile design.  I graduated in 2000 with a grade point average of 3.8.  My art teacher Susan Rietman who I am very close to always supported me in my work and motivated me to believe in myself.  Shortly after I graduated, I met someone and got married but, sadly found myself in an abusive relationship.  After I separated from my abusive husband I was diagnosed with endometriosis. I had five abdominal surgeries for this illness which resulted in more complications.  It was a very painful illness to endure.   During this time, I had a dream of God telling me that I would go through many difficulties, but I wouldn’t die, and He would always be with me. In late 2004 I had a surgery to correct my prominent rib hump, but it was unsuccessful and caused my spine to collapse at a fast rate.  I have a very rare and aggressive type of kyphoscoliosis. The doctors told me they couldn’t help and that I would end up in a wheelchair and then die. I remained bedridden and highly medicated to stay alive.  By 2006 I had a side curve of 115 degrees and a concave curve of 120 degrees.  I felt hopeless and very scared. No doctor would touch me because my condition was so severe and complex, and I only had State insurance which doesn’t cover a $500,000 plus surgery.

 

One night I had a dream of a white light filled Being who put His hand through me and straighten my spine.  Afterwards in my dream I stood up and walked away.  Two weeks later I found the doctor who saved my life. My oldest sister Ana took me to Texas where this doctor was able to correct my collapsed spine and rib hump. I have two rods and 26 screws holding my spine and had nine ribs cut and reduced in size to minimize the rib hump.  I grew five inches from the surgery.  This was a miracle for me.  The success of my operation was called a miracle by Dr. Shelekov and his entire team who performed the operation. I am forever grateful for what he did for me. Unfortunately, he passed away two years later.

After the spinal surgery I was doing so well that I was able to take a trip to Argentina to see my parents.  I especially wanted to see my mother who hadn’t believed I was well.  Unfortunately, a couple of years after my surgery I started to suffer from severe depression and anxiety.   I had never felt this way before.  The doctors eventually discovered I had ovarian failure and was going into early menopause. There were no medications I could tolerate due to the many side effects and sensitivities I have.  At this point I was 33 years old.  I was living in my brother’s basement at this time and my unmedicated depression and anxiety got so bad that I spent four years feeling hopeless and bed ridden. The one person who gave me hope was Father Frank who visited me.   In 2013 I went to the Mayo Clinic in Minnesota where they discovered I had pelvic floor muscle dysfunction which added to my IBS making it hard to go to the bathroom.  

 

Amidst of all this suffering one day in 2013 I got a letter in the mail saying I was next on the list to rent a small apartment for people with disabilities in Stamford, CT.  The news made me so happy because I had waited for eight years for this opportunity, but at the same time I was scared due to my many health issues.  By October of 2014 I was so ill that I couldn’t drink or eat and weighed only 92 pounds. I remember calling my college professor Susan Rietman who advised me to come to Mount Sinai where they were able to find a treatment that I could tolerate.  Another miracle. I spent my 40th birthday in Mount Sinai hospital.  At this time, I was praying to God and I promised Him if He saved my life once again, I would start drawing and painting since art was always something I wanted to do.  After a few weeks I began feeling better but just a few days after being discharged from the hospital I came down with a pulmonary embolism and once again landed in the hospital.  Doctors warned me if the blood thinners didn’t work, I could die. I was petrified but I kept thinking about my dream with God and somehow, I knew I was going to be okay.   

 

A year before when I watched a movie called Heaven is For Real, I was introduced to the artist Akiane Kramarik’s life and work.  This child prodigy inspired me to do art, especially to paint.  Her story about meeting God helped me to see and believe that my dreams where for real.  One of my dreams is to meet her. 

As soon as I was better a close friend of mine David Anderson helped financially to buy art supplies to start my art.  He always believed in me even when I doubted.  I began to teach myself how to draw and paint. I am mostly self-taught in fine arts. I should mention that for me learning is a true challenge because I have Attention Deficit Disorder and Retention Deficit Disorder, two challenging learning disabilities. I’ve discovered that I can learn best hands on.  So, for the past four years I’ve been drawing and painting in different mediums such as gouache, dyes, watercolors, color pencil, graphite, acrylics, oils and pastels. Because of my disabilities and limitations, I work a lot from photographs. 

 

I started doing portraits after I began volunteering in a daycare doing arts and crafts with children once a week. They inspire me to draw and paint them.  I also draw and paint animals.  I also love to paint animals, including people’s pets.  I work with a lot of details, so my work looks highly realistic. I have a true passion for what I do. I have entered over 10 juried exhibits where my work was accepted in all the shows. In January of 2017 I won third place at the Stamford Art Association.  I entered the very first portrait I ever did which was of my mother, who sadly I’m losing to Alzheimer’s disease.  Winning with the portrait of my mother meant so much to me.  I went on to win first place with the portrait of Jaden in graphite at the Rowayton Art center. And I won third place with a graphite portrait of Melissa. My accomplishments have made me work ever harder.  My story was published in a Spanish newspaper called La Voz and most recently it was published in English and Spanish in a magazine called Latin Colors…  You can go to the following link, Carina Imbrogno, Artist and Champion of Life – Liber-Art. 

 

I’m very grateful for the connections I’ve made through Instagram.  I got very inspired by a friend on Instagram by the name of Richard Macwee who is based in Scotland and is an amazing wildlife artist.  His work inspired me to continue drawing animals. I also feel very grateful and blessed to have migrated with my family to the USA where my life has been saved so many times.  My goal is to eventually teach what I know and to keep getting better and better at what I do.  I am open to trying different techniques. I have my studio is my small living room, but I hope to one day have a studio away from my apartment. 

Click Here to see more of Carina’s artwork.

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Alyssa Holtrust

Hello, my name is Alyssa and I am a scoliosis fighter! I have been a dancer since I was 3 years old. I loved everything about dance but as I got older, I became concerned about my appearance. When receiving my scoliosis diagnosis at 15 years old, I felt relieved because I finally had an answer as to why I only had one curve at my waist, why my shoulders seemed out of line, and why I was constantly in pain. What I thought was a “normal” part of development was so much more. My orthopedic surgeon recommended that I should wear a brace for 23 hours a day for 7 days a week until I stopped growing. Unfortunately, the brace was too expensive. I knew I needed to stay active, so I kept dancing alongside my peers for several years, but my condition worsened rapidly. I began to experience numbness in my toes which then grew to my legs; my pain also increased drastically. I had an ice pack and topical pain cream on hand during each dance practice. The muscle I had built from dancing for so long kept me standing, but my orthopedic surgeon made it clear to me that if I did not undergo corrective surgery, I could be in a wheelchair before I turned 30 years old. When I was 19 years old, I had a spinal fusion (T4-L3) and my outlook on life completely changed. I was angry, and I felt that my quality of life had decreased. I had incredible support from my family and friends, but I didn’t have anyone in my life who understood my condition and dancing wasn’t enjoyable anymore. I wasn’t aware that there was a whole community of young women and men experiencing the same thing as me.

I decided I needed to make a change. I slowly started to become active again to build up my strength. I tried yoga, weightlifting for women, cycling, and kickboxing. All of these activities helped build up my confidence to begin dancing again in 2019. I realized for almost three years that I had been standing in my own way of continuing to do what I really loved which was dance. Dancing again has been no easy feat, but it has been one of the most rewarding experiences. I started looking for ways to inspire other young women and men to continue what they are passionate about despite feeling insecure or having a limited range of motion. If you or someone you know has scoliosis, show your support by making them feel comfortable, loved, and continue to encourage them. Remind your loved one that their experience is normal. I’ve been given another chance at life to remain active and I’ve learned many valuable lessons about personal growth. I am so thankful to have my family and friends support me during my experience!

Here are some of my post-surgery tips:

  1. It’s painful, so try to maximize your comfort – use ice packs, extra pillows, and wear loose fitting clothing. Maybe pick up a pair of fun fuzzy socks too!
  2. Follow the instructions from your surgeon – if he/she says it’s time to walk, set a goal for yourself (even if it’s just a few steps) and do it!
  3. Ease back into exercise – be mindful of how your body feels and consult with your doctor about low-impact stretches or exercises to build up your strength.
  4. Let other people help you – after surgery you may be more dependent on people around you for assistance. As much you may want to be independent (like myself), your loved ones will want to help, so let them!
  5. Stay positive – do things that make you smile during recovery like reading a book, watching movies, playing games with your family and friends, and setting achievable goals for yourself. You can do it!
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Madeline Lenard

I was living in Okinawa, Japan when I was diagnosis with scoliosis in the 5th grade. I wasn’t really concerned about what the future might hold regarding this diagnosis. It all seemed pretty low key. I had a few x-rays of my spine and saw a specialist who told us the curve was rather small and to seek out a doctor once we arrived at our next location in Miami, FL. The doctor in Okinawa had interned with a spine specialist in Miami named Dr. Harry Schufflebarger and recommended we see him.  About six months later, in Sixth Grade, we had moved to Miami, FL where I saw Dr. Schufflebarger for the first time to keep tabs on my curves. Quickly, things went from low key to full on. I had an “S” curve which had grown since my first x-rays and now a brace was prescribed for 16 hours out of the day.  During the  2016 Christmas break I received what I thought was one of the worst gifts a girl could ask for, a confining piece of plastic, my first scoliosis brace which was supposed to slow down the curve progression. During this time, I was (and still am) a very active teenager. I was playing the flute in my middle school band, swimming, dancing, playing volleyball, hosting neighborhood events for children, and volunteering in the Pre-School department at my church. Slowing down was not on my agenda at all. I felt like my whole world was shattered now that I had to wear this brace.  I felt like I wouldn’t be able to do the things I loved.  Wearing my brace made me feel self-conscious and insecure.  I was afraid my friends and classmates would treat me differently, think I was not capable of the same things they were, or that they needed to be careful when I was with them; all because of my brace.  Looking back people probably did not treat me as differently as I imagined, but I wasn’t treated completely normal either.  Sure, I was not able to do things exactly like I was before wearing a brace, but with the encouragement of family and friends I made the proper adjustments and overcame the friction.

After wearing a brace for two and a half years my curves continued to worsen and it was decided that spinal fusion was a very real option. My parents always involved me in the discussions with my doctor and encouraged me to be an active participant in my health. I decided that I felt it was time to close the door on scoliosis. My parents could not believe my calm and “chill” attitude about moving forward with the spinal fusion surgery.  To be honest, I was not worried about the surgery and decided the tough recovery I would face might be the easiest part of this journey for me.  

I had my surgery on August 5, 2019 at Nicklaus Children’s Hospital in Miami, FL with Dr. Schufflebarger. He was awesome and even provided my Dad with pictures of the surgery which I still have not looked at. Week 1 was pretty miserable, my back felt like it weighed a million pounds, my ribs constantly hurt ( 4 ribs had an inch cut off to use for the fusing), and breathing was painful.  I didn’t want to get up and walk, but I knew it was the only way to continue to progress the healing and my physical therapist did a phenomenal job of encouraging me on our walks around the hospital. Over the course of the next couple of weeks my parents did many mid-night walks and late night NetFlix binges with me. I made incredible improvements and at my three-week Post-Op appointment Dr. Schufflebarger said I looked like I was healing great.  I had grown almost 2.5 inches and look down at my mom now! I was also allowed to get in the pool and ocean to chill out, which is huge for me because I live on Miami Beach and love the water.  This has been a long journey with more to go, but I have gained more self-confidence and strength after seeing what I am truly capable of enduring.

I would like to share three tips for anyone going through scoliosis.  First, keep good friends close, you need encouragement and support throughout this whole ordeal.  Second, get to know someone who has been through scoliosis or the even the surgery themselves.  It is huge.  It just brings a lot of positive energy and confidence for you and your family. I had three people who gave me wonderful advice and which helped ease me and my family concerns with the back surgery.  Third, be positive and have faith that there is a plan and purpose in this situation.  You will be changed in countless ways you did not even think possible. For example, you will have a new-found strength and confidence in yourself.  Initially, the surgery and recovery will be a challenge, as well as a mental and physical struggle, but the results have been worth it!

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Jody Touchton

At the age of 13, a routine school screening detected an irregular curvature in Jody’s spine.  Unfortunately, a follow-up to this screening wasn’t preformed until two years later, after she had noticed her shoulders and hips were crooked in a mirror.

An x-ray and orthopedic evaluation confirmed she had Idiopathic Scoliosis but she was told that her spine had already fused, she was done growing, and nothing could be done. 

Though she was also told the likelihood of progression in her curve was very small, her sagittal curve progressed approximately one-degree per year from 1987 to 2009. While she always struggled with severe back pain, she also began having significant digestive symptoms in 2009 and was diagnosed with gastroparesis.

Follow up evaluations with orthopedic surgeons determined her rotational curve had progressed to 90 degrees which was like a crimp in a garden hose preventing complete emptying of the stomach and limiting bowl function. 

After trying to manage her digestive symptoms and pain unsuccessfully with physical therapy and alternative treatments, she made the tough decision to undergo an adult fusion in 2012.

To keep her from being under anesthesia for the projected 17-hour operation, two surgeons performed her 16-level posterior spinal fusion with instrumentation in 9 hours.  That much time on her face still caused significant facial and eye swelling.

Scoliosis surgery as an adult has slower healing rates and increased complications compared to an adolescent.

Unfortunately, 2 of the 32 pedicle screws punctured her spinal cord resulting in a cerebral spinal fluid leak which was too large for an epidural blood patch so it took three months to heal from debilitating headaches and nausea.

Additionally, de-rotating the spine created nerve damage on the L5-S1 nerve resulting in a condition called Reflex Sympathetic Dystrophy (RSD) causing her left foot and leg to swell, burn, and have neuropathy. 

Treatment for RSD included a series of steroid nerve blocks in the spine which delayed bone healing resulting in three months on a walker and a year in her brace and on a cane. 

In 2013, she had surgery to remove her iliac bolts due to post-operative pain.  In December 2015, her titanium rods and back broke at L3/4 and she underwent surgery again.

The second incision from her neck to tailbone caused a significant amount of scar tissue and binding adhesions making standing up straight difficult. 

Because she has no movement in her entire spine, she has developed bilateral labral tears in both hips, femoral asymmetry, and exostosis on the sacroiliac joints and tailbone due the increase stress on the hips.  She believes if she had received earlier surgical intervention, her scoliosis outcome and recovery may have been much smoother with significantly less side effects.

Though Jody still struggles with chronic pain and mobility limitations following her T4-S1 spinal fusion in 2012 and subsequent surgery in 2016 to replace broken rods and hardware, she is grateful to have restored digestive function and continues to make daily improvements with physical therapy.

She is an advocate for early scoliosis detection and intervention to help others avoid the repercussions of delayed treatment and surgery as an adult.

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Andrea Herrera

In the Fall of 2013, I was admitted at Miami Children’s Hospital for a series of ongoing medical problems. When undressing, my mother noticed my back looked crooked. When she shared her concern, the nurse had told her “let’s focus on one problem at a time.”

 After I recovered I from my pre-existing condition, we returned to the hospital to see an Orthopedist. After One quick x-ray, I was diagnosed with progressive scoliosis featuring a double curve. The degree of the curve was already severe enough to call for surgical intervention- all only a few months after being released from a prolonged hospitalization and recuperating from another surgery.

We scheduled the surgery for June and spent the Summer ’14 healing. It has been over five years since then and I feel great and so glad to be in much better health.

Now, I study art at Miami Dade College and have only just begun telling the story of my medical journey and long road to recovery through my artwork.

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Elena Valle

My name is Elena Valle, and I am sixteen years old. I was diagnosed with adolescent idiopathic scoliosis when I was 12 years old by my primary care pediatrician. X-Rays showed a curve of about 18 degrees, and about every six months I came back to see how the curve progressed. After the doctors saw how fast my curve was progressing and with the knowledge of how much more growing I had left, they determined I should wear a brace. I was treated with a Rigo Chêneau brace that I had to wear for 21 hours a day. I wore that brace for 3 years, my entire middle school experience. It was hard because I couldn’t wear the clothes that I wanted to wear. Other kids would point out my brace when it showed under my clothes. But my friends were always supportive and never made me feel like it was something I should be ashamed of wearing. After those three years, I was no longer required to wear the brace, but only because surgery was inevitable.

On June 29, 2018 I had spinal fusion surgery at Johns Hopkins Hospital in Baltimore, MD. All of the nurses in the pre-op room were very calm and comforting, and made sure my family and I had nothing to worry about. My surgeon, Dr. Sponseller, always put me at ease, and I felt very confident in his abilities. My full recovery time was about 4-5 months, but I was feeling better and going out of the house by the 4th or 5th week post operation. My advice to anyone facing scoliosis bracing or surgery is to worry less and trust more. Even though this was the scariest thing I ever had to face in my life, it made me realize my own strength and resilience. Take comfort and knowledge in other people’s experiences that are shared to help you through your own personal journey.

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Katie Fitzpatrick

When I was 11, my school nurse gave me my annual checkup, in 6th grade they are also required to check for scoliosis.  A few days later I was called into her office and she had me bend forward to look at my back again.  I left her office with a letter to give to my parents, and I could tell something was wrong.  I found out later that day that she thought I had scoliosis, and that my parents should take me to the doctor for a diagnosis.  Later that night I noticed that my shoulder blades were uneven and so were my hips.  I freaked out, and my parents assured me that I would be okay, scoliosis is treatable.

I was seen by my pediatrician almost immediately, and I was officially diagnosed a few days later, I didn’t know anything about it.  My pediatrician explained to me that scoliosis is a curvature of the spine, it could range anywhere from a few degrees to well over 90º.  He sent out x-ray orders for me, and one week later I was sitting in a doctor’s office at Children’s Hospital of Philadelphia (CHOP) being told I was going to need surgery.  Bracing wasn’t even an option for me.  Between my yearly well-checkup in July of 2014 to November of 2014 my curves progressed from what we assume was between 0º-10º, small enough that my pediatrician wouldn’t notice, to two curves, one 43º and the other 37º. 

Within the next month, I had a lot weighing on me.  At the time I was terrified of having to get a flu-shot, never mind going through an invasive 9-hour surgery.  I didn’t know what to do. However, I didn’t want to sit around and have my parents and doctors decide everything for me; I wanted to be involved.  So, I began looking up doctors that could possibly treat me.  Between the doctors that I found, and those who had been recommended to us, my family and I visited 5 surgeons in the tri-state area.  After a lot of contemplating, we decided that I should be treated by Dr. Amar Samdani at Shriners Hospital for Children in Philadelphia. Dr. Samdani recommended Verbal Body Tethering (VBT), at the time an experimental procedure that would leave me with almost full flexibility.

Five months after my diagnosis, I had my surgery.  Dr. Samdani had promised me that I would be able to do just about anything I wanted to after my surgery, and he kept his promise.  The night before surgery I was sitting in a chair and by the next day, I was up and walking around.  After spending 5 days in the hospital, I went home and continued to recover there.  The recovery was the hardest part of my journey.  I went from being able to do anything, to having to sit around in at my house and be homeschooled. Soon enough though, I was back doing everything I had done before.  After six weeks I was almost 100% normal and able to return to school and participate in any activity, including swimming and volleyball.

Six months after my scoliosis surgery, Dr. Samdani told me I would need an additional surgery.  This one would correct my Spondylolisthesis, or a slip-disk.  Before my scoliosis procedure, we knew about my slip-disk; however, we didn’t know if I was going to need additional surgery to correct it. It turned out that I did, and this time I would need a mini fusion in the lumbar section of my spine.  About two months later, I had surgery to correct my Spondylolisthesis.  That recovery was the hardest I’ve went through, which isn’t uncommon for patients that have a fusion in their lower back.  But just like my scoliosis surgery, I was up and walking a day later and was able to return to school the following year. 

I was able to continue to live my life to the absolute fullest!  Six weeks after my surgery, I had no restrictions. Since then, I have gone on many roller coasters, been able to walk around for hours at a time and do just about anything I wanted to do.  I started high school two years later and participate in many clubs and other activities with no one being able to tell I have scoliosis or even have had two surgeries.

During one of my routine follow ups three years after my first scoliosis surgery, I was told that I would need a re-correction surgery for my scoliosis.  My family and I knew that there was a possibility of this happening, about 3-5% of all scoliosis patients need a recorrection.  We elected to re-tether me with Shriners Hospital doing the surgery again.  We decided to re-tether because if we fused my spine, I would have only one movable disk in my back. 

One year later in June of 2019, I had my third surgery, which went even better than the last two.  The next day I was up and walking, more than anyone thought I would be.  I was discharged from the hospital 5 days later and within 6 weeks I had fully recovered. I can drive down to Georgia, about a 13-hour ride from my house with no problems.  Now, I could do the same any activities as my sister, with almost no problems.  Three weeks later I was able to start back at school.

It has been two months since my re-tethering surgery, and I could not have asked for a better recovery.  I can sit at school for the entire day with no problems, walk home if I’m feeling up to it, and go to any football games or club activities that I want.

My Shriners team has been amazing! They helped me get me through it all with almost no problems.  Since day 1, they knew how they wanted to treat my scoliosis and made sure I understood what was going on every step of the way. Everyone at Shriners, from the receptionist at the front desk, to the x-ray technicians or the doctors and nurses… they always made me feel like I was at home there.  They want all their patients to feel like they have a voice in the treatment and a family during and after treatment.  I am so thankful for my Shriners Family and everything that they have done for me and my family.            

After my surgery I wanted to get involved with spreading awareness with Scoliosis.  I realized how lucky I was to have a support system that got me through my diagnosis, surgery and recovery.  I want other people to feel that same way, because no one should be alone in their journey with scoliosis.  Now after three spinal surgeries, I have decided to work with Shriners’ Hospitals and Setting Scoliosis Straight to help spread awareness of scoliosis and share my story with others because of the monumental impact these two organizations have had on my life and the lives of others. I believe that no matter where you are with your scoliosis, you need someone to be there for you during your diagnosis and treatment. I know firsthand  that both of these organizations will be there support you!

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Emm Arruda

Watch this interview video with Emm Arruda about her experience with scoliosis and how she powered through her spinal fusion surgery and became a successful professional model for many high profile fashion designer.

Thank you Emm for all you do for the Setting Scoliosis Straight Foundation!

To read more about Courtney’s journey with scoliosis, Click Here!

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Courtney & Heidi Rone

Watch this interview video from Courtney and her mother Heidi talk about their experience with scoliosis and Power Over Scoliosis events.

Thank you Courtney and Heidi for all you do for the Setting Scoliosis Straight Foundation!

To read more about Courtney’s journey with scoliosis, Click Here!

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Tanya Krueger

Watch this inspirational video from Tanya Krueger and learn how she didn’t let scoliosis take over her life!

Thank you Tanya for sharing your incredible journey with the Setting Scoliosis Straight Foundation community!

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