By Stephanie Turner sturner@aikenstandard.com Jun 25, 2017 Updated 23 hrs ago

When Leah Stoltz, 24, was diagnosed with scoliosis, she was in middle school and said she felt alone.

In order to connect with others in her situation, the New Yorker began a support group.

What started as a meeting with four girls in 2006 has exploded to an organization with chapters across the world. That organization is known as Curvy Girls and is based in Long Island.

In addition to chapters around the United States, there has been groups in Canada, Brazil, Australia, Mexico, Turkey, Spain and Kenya. Elisabeth Harkins, 18, of North Augusta, began the Curvy Girls Ga/SC-Scoliosis Support Group in 2011 and still serves as its leader.

June is National Scoliosis Awareness Month.

More about scoliosis

Scoliosis is a condition in which the spine curves to the side; it affects millions of people in America alone, according to the American Association of Neurological Surgeons.

The onset of the condition usually happens between the ages of 10 and 15.

Abigail Mullins, an 18-year-old from Grovetown, was 14 when she was diagnosed.

“I went into the doctor thinking I had a pulled muscle, which turned out to be the day I got diagnosed with adolescent idiopathic scoliosis,” she said.

Stoltz was diagnosed with the same condition.

Both women wore back braces at first but inevitably needed surgery.

“I tried a hard cast brace for almost a year back when I first got diagnosed, but then we found out that the brace wasn’t going to do much because my body was almost done growing. So I tried to wait it out to see if my curve would stop increasing. By my senior year, my curve had gotten … bad,” Mullins said.

Mullins’ operation occurred in December. Two rods and 17 screws were put into her spine.

“(They are) not only holding it straight but keeping it together to where it doesn’t start to curve again. … I was left with barely a scar,” Mullins said. “The surgery has helped me in so many ways. My clothes finally fit correctly because my hips and shoulders are aligned now. I can stand for longer periods of time without the back pain forcing me to sit down. The surgery has made certain pains stop like in my lower back and neck. On rough days, living with scoliosis even made it painful to breathe because my rib cage was shifting so much.”

Stoltz would try to avoid wearing her brace by hiding it in her locker, according to the Curvy Girls’ website. Her surgery happened in 2006. She had two titanium rods and 22 screws placed in her spine.

“My biggest concern was that I wouldn’t be able to dance for a year,” Stoltz said on the Curvy Girls’ website.

Years have past since her operation, and Stoltz said she is still able to go about her regular activities.

“I live a very, very normal life. It’s sometimes funny for me to remember that other people can bend their back even though I can’t. … I still do everything.  I play golf.  I dance. … I go to the gym.  I work out.  I just have really good posture,” Stoltz said, in a lighthearted manner.

More about Curvy Girls

While Stoltz has survived her adolescence with scoliosis, she knows that girls around the world still struggle with their own experiences with the condition.

“The No. 1 thing I’ve heard from everybody is that, when they are diagnosed, they feel so alone, Stoltz said. “It’s really hard to find someone else with it. It’s not very visible on most people, so people feel very alone, and that’s exactly how I felt. I felt very alone when I was wearing my brace and didn’t have anyone to talk to, so a lot of times, the first time that a girl will come to the meeting, is the very first time that they are meeting anybody else that has scoliosis. So it’s just this feeling about not being alone anymore.”

Stoltz won the Teen Nick HALO Award for starting the support group when she was a senior in high school.   HALO stands for Helping and Leading Others.

The Curvy Girls founder acknowledged that the award boosted attention to the organization.

“It’s absolutely amazing. It’s so crazy to think about that it’s become such a huge thing, but I recognize that the reason it has taken a life of its own because of this pay-it-forward aspect,” Stoltz said.

Through her work with the local chapter, Harkins has seen the impact it has had on girls here.

“It has connected girls in different stages of scoliosis so they can learn from each other,” she said. “Some girls have gotten more confident and become better advocates. I think we have all learned that just because we have scoliosis doesn’t mean we can’t do things. We might just have to find a different way to do some things.”

Curvy Girls has members from ages 6 to 22, with the leaders being at least 11.

Harkins also has gotten proclamations passed the last few years, and this year is no exception.

The state proclamation from S.C. Gov. Henry McMaster’s office declares June as Scoliosis Awareness Month, while the City of North Augusta’s proclamation from Mayor Bob Pettit and North Augusta City Council proclaims the month as Scoliosis Early Detection Awareness Month.

For more information on Curvy Girls, visit www.curvygirlsscoliosis.com.

For more information on how to join Curvy Girls Ga/SC-Scoliosis Support Group, message Harkins or the group through Facebook, call 803-270-1182 or email lisharkins@gmail.com.

Facebook Twitter Google Digg Reddit LinkedIn Pinterest StumbleUpon Email

June 21, 2017 By Tori Famularo Kidsday Reporter

 

Imagine feeling restricted, all day and all night, and not being able bend down. That is what wearing a scoliosis brace feels like.

Scoliosis is the abnormal curving of the spine. It not only affects your spine, but it also puts a physical strain on your body. This can include your lungs, heart, nerves and joints and also can cause chronic pain throughout many areas of the body.

Since I was young, my mother had always noticed a curve in my back. After examining my X-rays the doctor diagnosed my condition as scoliosis at 29 degrees. He informed us I had a moderate curve that without treatment could develop into a severe curve and require surgery.

The treatment was a large piece of plastic molded to my body that I had to wear day and night. At the time I was only 9, and had many mixed emotions about the situation. The brace went from my tailbone all the way up to below my shoulders. Wearing it to school at first was a challenge, but I had more than enough support from all of my friends. Instead of making fun of it, they became curious, and even wanted to try it on. It was hysterical when kids tried to knock on my brace and ended up hurting their knuckles.  Still, sometimes wearing the brace was unbearable, especially when living in Florida with the hot weather.

The second summer I had my brace, I ended up moving to New York, meaning that not only did I have to make new friends, but I also had to introduce them to my brace.  My new friends gave me both moral and physical support.  Time passed, and I grew taller, and had to get rid of my old brace because it was too small, much like crabs when they grow out of their shell.

It was not until last summer that my curve really increased.  My curve went up a stunning 12 degrees in a matter of three months due to a growth spurt, leaving me with a 41-degree curvature. My doctor warned me that if it went up 5 degrees more, I could face surgery in the foreseeable future.

I still wear my brace and have avoided surgery for the moment. My brace can be both my best friend and my archnemesis. It has not only taught me independence and self-confidence, it has also taught me to embrace my condition and it gives me the courage to talk about it with many kids and adults. Though having scoliosis can sometimes be a struggle, it does not define me, it only makes me stronger. After all, I’m bent, not broken!

Facebook Twitter Google Digg Reddit LinkedIn Pinterest StumbleUpon Email

IANS | Mumbai June 21, 2017 Last Updated at 21:42 IST

A 14-year-old girl, born with scoliosis, a sideway curvature of the spine which also caused her breathing issues, has been treated using a new technology called 3D C-arm and spinal navigation, which helps corrective surgery to be performed more accurately, said doctors on Wednesday.

Disha’s problem started after her deformity became noticeable after she turned 10. Her condition started worsening in terms of appearance when her parents noticed her prominent ribs, disproportionate shoulder level and an uneven hump on the left side of the hip when she bent over.

Doctors said the scoliosis also created discrepancy in the length of her legs.

“She started having problems in breathing as the area in the rib cage region was confined drastically. When she arrived at our clinic, her long erect x-rays revealed significant scoliosis as result of D12 hemivertebra. This basically means that her 12th thoracic vertebra was half in size,” said Arvind G. Kulkarni, head of Spine Scoliosis and Disc Replacement Centre at Bombay Hospital.

Only the right triangular half of the vertebra was formed and the left half was missing, which led to bending of the spine on the missing side, leading to scoliosis. The right shoulder blade was more prominently protruding along with one hip higher than the other.

The doctors said that though surgery was the only solution they chose to do it with the help of the new technique which creates a virtual image of the curved spine on the screen and optimised the placement of the pedicle screws and rods with close to 100 per cent accuracy.

As the condition was progressing with time, the highly-challenging deformity correction and spinal fusion surgeries was performed with the help of the new techniques.

“The use of neuromonitoring as well as spinal navigation increases the safety of deformity surgery thus minimising the risk of spinal cord damage. We utilise the services of spinal navigation and neuromonitoring to make deformity correction surgery extremely safe.. She has recovered well and is now confident about her appearance,” said Kulkarni.

Facebook Twitter Google Digg Reddit LinkedIn Pinterest StumbleUpon Email

By Roland Stoy For The Daily Reporter
Posted at 10:42 AM
Updated at 10:43 AM

COLDWATER – It is for the children, and along with the greatest reward of
donating to a worthy cause, there will be delightful fringe benefits from Amish
kitchens.

On Friday, July 7, members of the area Amish Community will be hosting a
benefit event to raise funds for Shriners hospitals, which treat hundreds of
children throughout the country with scoliosis, spina bifida, spinal deformities,
clubfoot, hand problems, hip disorders, missing limbs, leg-length discrepancies,
skeletal growth abnormalities, spinal cord injuries and burn injuries.

The family event will be held at 2 p.m. at the home of Nathan and Rebecca
Eicher, 830 Newton Road, just outside of Coldwater.

There is no charge for admission or for the family activities, but donations will
be accepted.

Branch County Shrine Club Benefit Coordinator and past president, Jim Dostal,
along with current president, Roger Kimble, said there are 22 hospitals in North
and Central America, including one in Mexico City and one in Montreal Canada,
with the rest located throughout the United States.

With parental approval, should they have insurance, the Shriners will pick up all
medical costs the insurance companies do not pay. Should the family not have
any insurance and/or no funds to pay for medical costs, the Shriners
organization covers the entire medical cost for the child.

The hospitals that serve this region are Chicago Orthopaedic, Cincinnati Burn
Center & Erie General. Members sponsor many children (up to 18-years-old) in
this region, with the Shriner bus or van in service up to five days per week
transporting kids to their various appointments for surgery and doctor visits.

Family activity begin at 2 p.m. with miniature pony rides. A grilled chicken
dinner with all the trimmings beginning at 4 p.m., followed by homemade pie
and ice cream. A variety of items will be sold by auction beginning at 5 p.m.,
including a miniature pony sale. Donations for the auction will be accepted up to
and including the day of the benefit.

A miniature pony pull begins at 6:30 p.m.

The Shriners organization was formed by a group of Masons in 1922 and is a
philanthropic and community action group with a long history of providing
medical care for children.

Call Jim Dostal (517) 317-4527 to donate or for further information.

 

Facebook Twitter Google Digg Reddit LinkedIn Pinterest StumbleUpon Email

By  Judy Murphy

-June 29, 2017

Arts Week with Judy Murphy

Art college made such a difference to my life, giving me something to look forward to every week. Even if I never made art, the people I met there and the friends I made have become so important.”

So says Galway City woman Marie Cunningham, one of 13 mature students who graduated in Fine Arts from GMIT last month. Marie did make art as well as friends and her work will on show at a group exhibition in Kinvara this week, alongside work from six fellow graduates.

Marie’s powerful paintings capture the major surgery she had in June 2016 to tackle adult onset scoliosis (sideways curvature of the spine). The condition was destroying her body and leaving her in continual pain.

“I lost most of my 50s to scoliosis,” she says as we sit in the sunroom of her home in Newcastle – it serves as her studio and the space where her daughter Jennifer, also an artist, gives lessons.

Marie takes out her sketchbooks which are a window into what her life was like with scoliosis and how, despite the pain, the artist in her wanted to capture last year’s operations – one lasting nine hours, the other seven. These books are like a form of diary, where sketches are sometimes accompanied by her own thoughts, or by newspaper cuttings or book covers.

There’s one photo of a huge titanium screw, part of the ‘hardware’ that was inserted in her back to help tackle her condition. The surgeon carrying out the operation allowed Marie to have it the night before the operation so she could photograph it. She subsequently captured its blue-grey hue in a striking painting.

She also did a painting of her feet as she lay in the hospital bed, and there’s one of her arm featuring the many cannulas that supplied her with medicine, including the strong painkillers she needed post-operation.

 

Facebook Twitter Google Digg Reddit LinkedIn Pinterest StumbleUpon Email

By Lina Abdennabi

June 23, 2017

It’s 2015, and Avital Harris is out on a walk with her family. It’s a hot day. Too hot frankly, and she’s had about enough. Some combination of the heat and playful aggravation that only a little brother can elicit overwhelms her. She loses it.

“I took off my back brace and literally threw it as hard as I could into the woods,” Avital recounts while laughing. “I said, ‘You can get it,’ and walked away. It wasn’t my finest hour.”

Such behavior between a 13-year-old and a younger sibling is certainly not a novel concept, but more than teenage angst played a role in this equation. At the time, Avital had been recently diagnosed with scoliosis. She had received a brace to attempt to halt the increasing curvature of her spine, and while effective, it was cumbersome.

“It’s Minnesota in the summer,” Avital says. “You want to get out and enjoy the weather, and sometimes having the brace made that a little harder to do. I didn’t always handle it very well.”

A Surprising Diagnosis

Adolescent idiopathic scoliosis (AIS) is by far the most common form of scoliosis, affecting children between ages 10 to 18; it’s found in as many as four in 100 adolescents. While heredity may be a factor, the cause of AIS is unknown. It can happen to any child.

Avital’s pediatrician discovered her scoliosis during a routine checkup and referred her to spine surgeon Tenner Guillaume, MD, at Gillette Children’s Specialty Healthcare.

“When you’ve been healthy your whole life, it can be kind of jarring to have something like this happen to you,” Avital recalls. “When Dr. Guillaume said that my spine curvature came right up to the point of requiring surgery, I thought, ‘This can’t be happening.’ I was freaking out.”

Looking on the Bright Side

Despite the anxiety and fear that accompanied her diagnosis, Avital also felt relieved:  Her pediatrician had caught her scoliosis just in time to avoid surgery. Instead, she could wear a back brace. “The process seemed a lot less scary and would allow me to remain flexible in the long-term so that I can play sports. My friend had a brace before, so I was more familiar with it.”

At Gillette, Avital was fitted with a brace after being casted in different standing positions to ensure comfort. The fun part came when she had the chance to pick a design for her brace. She opted for the New Orleans Saints logo, in honor of her father’s hometown. A week later, Avital received her brace and started wearing it 20 hours each day in an effort to correct her spine curvature.

The careful and comprehensive approach that addressed all of her possible treatment options made Avital’s experience at Gillette special, as she explains. “Everyone that I met made me feel like my opinion was important. They planned my treatment around what my goals were, and made sure all of my questions were answered before moving forward. It was really important to my doctors that I understood everything that was going on.”

As an added bonus, she says, “I learned a lot of new vocabulary from sitting in appointments with Dr. Guillaume and my parents.”

Avital’s experience at Gillette also altered her perspective on life. “Most of the patients I met were younger than me, and many of them had more serious conditions,” she explains. “They were working to overcome so many obstacles yet remained full of life and happiness. The courage I saw every day was inspiring; it encouraged me to always look on the bright side and not let my condition stop me from achieving my goals.”

‘It’s Not So Bad!’

Although going back to school wearing a brace wasn’t necessarily a concern for Avital because it would barely be noticeable underneath her clothes, she admits, “I wasn’t looking forward to explaining why my back was so hard when friends would hug me, or why I had such perfect posture all the time. I would wear huge sweaters so that nobody would be able to detect it.”

Getting used to sleeping in her brace soon began to feel natural for Avital, and the few hours a day that she didn’t need to wear it, she would go swimming. As she got used to wearing it every day, Avital describes it as more annoying than anything else. “My friends would try my brace on and tell me ‘It’s not so bad.’ But I’m sure they wouldn’t say that if they wore it for 20 hours a day, especially in the summer!”

Aside from the genuine curiosity from friends and family, Avital didn’t appreciate people feeling sorry for her because of her scoliosis. It didn’t feel right, because Avital knew she was going to be OK. She didn’t see herself any differently than others, and did not want to be treated as such.

No More Oversized Clothing

Besides being an active swimmer and a basketball and ultimate Frisbee player, Avital is also a young entrepreneur in-the-making. At just 15 years old she is already working on a business plan to develop a clothing line that will accommodate kids who wear braces. “Scoliosis is very common–a lot of people have to wear a brace, and I don’t think it’s fair for anyone to struggle to find clothing that fits and is still flattering,” she says.

After two years of wearing her brace nearly 24 hours a day, Avital’s Gillette team had happy news—she could begin to phase it out. She began with not wearing it to school, then only during sleep. Now, as she gets ready to enter her sophomore year of high school, Avital is excited that she doesn’t need to wear her brace anymore. The curvature in her spine that once reached 45 degrees now sits in the low 30s, and Avital is eager to transform her experience into change.

“I want kids who have scoliosis to know that they don’t need to feel afraid or ashamed about their brace and condition. I want them to know that even though committing to wearing a brace all the time is hard work, it will pay off and they will be just fine.”

 

Facebook Twitter Google Digg Reddit LinkedIn Pinterest StumbleUpon Email

The feeling of being back in her old dance studio brought back a ton of memories for Melissa Gonzalez.

“I started dancing when I was three,” she said proudly, in her green USF Bulls shirt.

The Xtreme Dance Company of Tampa practice room is where Gonzalez spent six years perfecting her craft. It’s where endless leaps, spins, and bends propelled her to her dream of making the USF SunDolls dance team.

It also represents a place where she thought dancing may end.
“It eventually got painful as the curve got worse,” said the 19-year old.

Her pediatrician discovered scoliosis at a routine checkup when Gonzalez was 12-years old. The next five years she tried therapies and, a back brace but nothing worked.

She needed corrective surgery.

Dance may be over.

“That was very serious. That was my number one question to my doctor,” she said.

Gonzalez underwent spinal surgery in 2015 at the Children’s Scoliosis Center at St. Joseph’s Children’s Hospital in Tampa. Since then, she graduated from Tampa Catholic High School, won a state dance championship, won runner-up for the Miss Florida preliminary pageant, and enrolled at USF Honors College, where she is a second-year veteran of the USF SunDolls Dance Team.

The life-change has been profound.

“Complete strangers have contacted us and said, ‘My daughter has scoliosis. I didn’t think this was possible’,” said Gonzalez’s mother, Vickie.

Melissa is now studying to become a pediatric orthopedic surgeon, so she can help children who are dealing with scoliosis have positive outcomes like hers.

“I’ve always wanted to be a doctor but this surgery really changed my life and I want to help change other people’s.”

“There have been incredible breakthroughs in medical technology and those living with scoliosis have very real options for treatment,” said Dr. David Siambanes, director of the Children’s Scoliosis Center at St. Joseph’s Children’s Hospital in Tampa, and the surgeon who performed Gonzalez’s surgery. “Melissa’s story is wonderful and unique, but recovery results like hers are increasingly more common, where most patients are able to experience a normal life after treatment.”

Melissa has gotten to shadow her surgeon in preparation for her career and watch him perform the same procedure that she underwent.

According to the National Scoliosis Foundation, Scoliosis affects up to three percent of the U.S. population. That figure equates to roughly seven million people nationwide.

 

Facebook Twitter Google Digg Reddit LinkedIn Pinterest StumbleUpon Email

The 28-year-old model has admitted she suffers from the medical condition, which is when a person’s spine curves
sideways, and in honour of Scoliosis Awareness Month the star has collaborated with the company to create a
choker necklace, which will see all of the proceeds raised from purchasing the item go towards Scoliosis Research
Society.

And the blonde-haired beauty is “excited” to launch the product and recognise those who, like her, battle with the
disease.

Alongside a picture of the catwalk icon adorning the garment, which was shared on her Instagram account, she
wrote: “I’m so excited to launch this necklace collaboration with @pluma_italia in honor of those living with
#scoliosis! I’m proud that percent of the proceeds will benefit Scoliosis Research Society. (sic).”

And Martha has named the product after her mother because her parent was her “biggest supporter” during her
“scoliosis journey”.

She added: “I named the necklace after my mother, my biggest supporter throughout my scoliosis journey! Big
thank you @luisaviaroma. Shop the #linkinbio #gotyourback (sic).”

And the brand was honoured to work with Martha on the product.

A post on Pluma Italia’s photo-sharing site read: ” Scoliosis Awareness Month

We had the honor of co-designing necklaces for @marthahunt to raise awareness for scoliosis. (sic).”

Martha’s fellow Victoria’s Secret model, Sara Sampaio, is also “so proud” of her friend for her latest venture and by
making the illness more well known because she also battles with the condition.

The 25-year-old fashion muse posed in a picture on social media, which captured her wearing the product with a
black bralette and denim jacket, that she captioned: “As someone who also has scoliosis I’m so proud of my girl
@marthahunt for creating this necklace in collaboration with @pluma_italia. 100% of the proceeds will benefit the
scoliosis research society! #gotyourback (sic).”

Facebook Twitter Google Digg Reddit LinkedIn Pinterest StumbleUpon Email

O&P News, July 2017

ClinicalTrials.gov identifier: NCT03017755

Purpose: This survey aims to help understand the influences related to the decision
for adolescent idiopathic scoliosis (AIS) treatment (observation vs. bracing vs.
surgery). The investigator plans to create a decision aid to help families make a
decision about the treatment choice being presented to them.

Study type: Observational

Study design: The study will use a cohort observational model and prospective time
perspective.

Estimated enrollment: 1,000

Eligibility criteria: The ages eligible for this study are 13 years or older. Both genders
are eligible. Healthy volunteers are not accepted. The sampling method is nonprobability
and the study population is AIS patients and their families. Inclusion
criteria: Subject and/or parent of subject who has previously been treated for AIS.
Exclusion criteria: Age younger than or equal to 12 years.

Study start date: April 11, 2017

Estimated study completion date: December 2018

Estimated primary completion date: December 2018 (final data collection date for
primary outcome measure)

Primary outcome measures: The primary outcome measure is to analyze the
number of subjects who have completed the survey (time frame: baseline,
approximately 3 years).

Secondary outcome measures: None

Sponsors and collaborators: Mayo Clinic
Contact: Vickie M. Treder, (507) 538-3561, treder.vickie@mayo.edu.
Information acquired from: Mayo Clinic, via ClinicalTrials.gov

Facebook Twitter Google Digg Reddit LinkedIn Pinterest StumbleUpon Email

Written by Mackenzie Garrity | Wednesday, 28 June 2017 20:35

A study published in Spine examined the revision rates after scoliosis surgery in adolescents and
young adults. The study included 1,435 patients who underwent surgery from 1995 to 2009.
Results showed revisions for scoliosis surgery continue to occur well after two years with late
infection being the most common cause.
Here is what you need to know.

1. A majority of the patients – 81 percent – underwent posterior spinal instrumented fusion.

2. The leading cause of early revisions was implant-related issues and infections. The reason for
reoperation wasn’t uniformly distributed over time, which additional causes wound complications,
residual deformity and/or progression and pseudarthrosis.

3. After the study, 75 or 5.2 percent of patients required reoperation.

4. Of all reoperation surgeries, 22 occurred within three months, 10 before one year, 12 before
two years, 20 before five years and 10 after five years.

5. Survival rates were as followed: 98.3 percent at three months, 97.5 percent at one year, 96.6
percent at two years, 93.9 percent at five years and 89.8 between five and 10 years.

Facebook Twitter Google Digg Reddit LinkedIn Pinterest StumbleUpon Email