Helping Curvy Kids Like Me | Teen Ink

Helping Curvy Kids Like Me

September 1, 2014
By Sami_Petersen BRONZE, South Windsor, Connecticut
Sami_Petersen BRONZE, South Windsor, Connecticut
1 article 0 photos 0 comments

Favorite Quote:
'When everything seems to be going against you, remember that the airplane takes off against the wind, not with it'

I was born with a straight spine, but one rainy day in 6th grade after bending upside-down for an eternity, the nurse screening for scoliosis handed me a paper for my parents. Pulsing with emotions, I quickly unfolded the note. With my heart pounding, I read a word that changed my life forever- scoliosis. Scoliosis, a side-to-side curvature of the spine, afflicts one in 40 people and does not discriminate by age, gender or ethnicity. When diagnosed, I knew nothing about it or anyone who had it. There was little support outside my family and I hid my scoliosis out of embarrassment. But it became impossible to hide my progressive deformity, so I did the opposite- I shared my story with anyone who asked. Shockingly, most people didn’t know what scoliosis was. I started blogging online and with each person I educated, I was slowly making change.

On September 12th, 2012, I underwent complex spinal fusion surgery to correct my severe scoliosis. With the help of two steel rods, 17 screws, a bone graft, a wonderful surgeon, and family; my spine was straight again! From the ICU, I decided to give back. In March 2013, after months of learning and preparation, my non-profit, SHIFT scoliosis, was born. With the mission of providing education while supporting those affected by scoliosis, I started giving back.

For the past twenty-three months, I have spent every moment possible on SHIFT. What started as a blog has blossomed and grown rapidly. Today SHIFT has a large and growing social network which includes children, adults, teachers, doctors, and companies from around the world. We are motivated to make social change and help individuals get the support and medical services they need.

My SHIFT initiatives to help people with scoliosis includes:

Wrapped with Love (WWL) is one of SHIFT’s most exciting initiatives. WWL is run by volunteers who conduct community events making blankets which are sent to hospitalized scoliosis patients. With 24 Chapters to-date and dozens of national and international events held, WWL has donated more than 900 blankets since February.

Snuggles for Scoliosis gives PillowPets to disadvantaged patients in countries such Ghana, Dominican Republic and Uganda.

The Worry Stone Care Project is a family helping family initiative where each stone bought another is given to an impoverished family.

The Scoliometer Project provides scoliometers, an essential screening tool, to schools promoting objective measurements and screenings.

Seeing the Curve, is a scoliosis screening outreach initiative. Seeing the Curve teaches professionals and laypeople how to detect scoliosis cases and seek help as early. Because early diagnosis often leads to better prognosis, this initiative is aimed at educating people about scoliosis, its signs, symptoms, proper diagnostic practices and treatments. SHIFT has conducted two mission trips to screen for spinal deformities within an impoverished community. To date, over 1300 people have been impacted at a low cost of $2.75 per person.

SHIFT provides education, awareness and in-person support. Additionally, we provide support through online platforms such as our website and social media pages. In the past year, SHIFT has had an in-person reach of over 20,000 and over 1.6 million visits to our social media platforms.

This journey has created many memories and I wouldn’t do this essay justice without sharing two stories that really epitomize SHIFT to me.

The first occurred in the beginning when we just started offering scoliosis awareness shirts. I had become aware of Progressive Infantile Scoliosis (PIS) which is a potentially life threatening form of scoliosis diagnosed in children birth to three years old. The plight of these little ones inspired me to make a shirt design with a baby on it. We had sold several and a week later a mom contacted me about the shirt. She said when her toddler saw the shirt she exclaimed, “Oh! It’s me!” It was the first time she identified with an image.

More recently, we traveled to the Cheyenne River Sioux Reservation (CRST) in Eagle Butte, SD. This community is the poorest place in America by US Census with an unemployment rate of 90% and where only 30% of children finish high school. Local health services are extremely limited and the closest children’s hospital is six hours away.

During a SHIFT scoliosis screening session an adult came to be screened. Although our primary focus that day was children, medical care for adults on CRST is greatly lacking, so we were happy to check his back as well. He had asymmetry of his ribcage and back and told us that two older family members had ‘crooked backs’ - most people on CRST have never heard of the word scoliosis. Before he left we gave him our information brochure and encouraged him to check his children for signs of scoliosis.

Hours later, as we were wrapping up, he returned with his five year old son. He had read the booklet and wanted us to check him. His son had obvious signs of scoliosis plus a chest wall deformity and facial abnormalities. Our doctor sent him right away for an x-ray, but the health clinic denied the X-ray due financial issues.

When we heard of this, we contacted the family. It turns out that his mom had been concerned for a while about not only her son, but her younger daughter as well. She felt there was something off but didn’t know what until the afternoon her husband returned home with the SHIFT information. She said it finally made sense. This mom was worried, but grateful to have the information about scoliosis. We assured her that we will advocate for her family and we have been doing just that. This family will receive the services they need because we will make sure of it.

We will continue to help until everyone with scoliosis gets the care they need. It is my passion and my dream. A dream we are making into a reality.

The author's comments:

After undergoing my own scoliosis journey, it was my dream to give back to others dealing with similar medical issues.  Through my non-profit, SHIFT Scoliosis, not only do I have the ability to give back but also to engage other  young people in helping disadvantaged children struggling with complex spinal conditions. 

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