Ariel Nessel, Contributor

Co Founder of The Pollination Project

In her early teenage years, Nwamaka Godwin Iduh started to notice the right side of her rib cage and left side of her hip protruding in a way it hadn’t before. Months later, a doctor diagnosed her with scoliosis. Both Nwamaka and her mother had previously never heard of this condition, which causes an abnormal curvature of the spine in many teenage children. The Beyond A Curved Spine (BACS) website shared her story, along with others, to raise awareness of scoliosis in Nigeria and throughout Africa.

Abisola Oni and Abimbola Oladapo started the Beyond A Curved Spine (BACS) initiative because they realized that, despite the importance of getting diagnosed early, there was little information available on scoliosis-related issues in Africa. To work toward the broader goal of awareness, they are taking specific actions such as providing screenings, making speaking arrangements and providing a platform for people to share their stories. And, when it comes to scoliosis, awareness can mean the difference between a teenager possibly having to get surgery and getting treated early instead.

Erika Leaf is another grantee who recognizes the importance of speaking up and decided to work toward greater political engagement through postcards. She began The Collective Vision postcard project in to empower ordinary Americans to take political action and communicate what they care about. The project’s first step was to offer the “Democracy Pack,” a set of 20 postcards with tips on how to write effective messages to elected officials as well as suggestions for what to write about. Collective Vision is creating a new set of postcards that will combine quotes about social justice with artwork and photography. The grant will allow the project to offer stipends to artists whose work is chosen for publication.

Sometimes awareness can seem like an abstract concept. Grantees like Abisola, Abimbola and Erika remind us that even the most elusive goals can be broken down into specific steps.

Today we honor 14 incredible projects that are taking concrete actions to make the world a more compassionate place.

One Stitch at a Time teaches community members how to sew in Jacmel, Haiti. Along with valuable technical skills, students also learn about business management from project management to marketing.

Betty Abah’s project benefits girls, teenage mothers and other vulnerable young women in Makoko and surrounding slums in Lagos, Nigeria. They will use natural materials from the local environment to create products such as bags, shoes, purses and other materials.

Volta Free School helps young boys and girls in Sovie, Ghana who are out of school for different reasons acquire the knowledge and skills they need to go back and join their colleagues in school.

The Purple Pearls Women’s Entrepreneurship Development Programme works with women in Nigeria, especially those that have been displaced due to terrorist activities, who have acquired vocational skills or have businesses. The project helps them develop their entrepreneurial and business development skills to become successful entrepreneurs and reintegrate into society.

Umijoo is an environmental art book about the connections between our daily life decisions and the health of our planet. Environmental activist Casson Trenor and painter Caia Koopman joined forces in the United States to create this illustrated tale, which is designed to ignite interest in ocean conservation and responsible food choices.

The Let’s Talk English program in Ouzio Mitsamiouli, Comoro Islands encourages young people to learn how to speak English all over the Cembenoi Region. Five advanced students from the Urango English Center, who are training to become teachers, will volunteer in neighboring villages where they will teach English to young people like themselves.

The Skill Builders Project is starting the first-ever photography class for Washington Correction Center in Washington State. Through regular workshops, the inmates will learn to express themselves visually and share their stories with the public.

Founded by Shakera Bramwell, an undocumented immigrant from Kingston Jamaica, Rebel Cause’s mission is to facilitate the collaboration of groups of young adults of color seeking to improve the quality of life in their communities. One of their programs, Rebel Food Cart, is a mobile meal program that provides smoothies as a meal alternative for Boston’s food insecure population.

The Veteran’s Voice Project is an initiative in Texas, which provides storytelling classes for veterans who are currently incarcerated, allowing for the processing of previous traumas.

Spreading Peace In Communities Everywhere (SPICE) is committed to empowering youth in Austin, Texas to be confident and comfortable in their communities by encouraging healthy lifestyles, gender equality and human rights.

Engaging the Latino Community Through Dance is a program in Southampton, New York providing low cost dance parties and classes for the Hispanic and Latino community to help combat isolation and improve health through affordable, family friendly events where members of this community can dance, socialize and share their culture.

Charles Orgbon in Bogota, Colombia will partner with the organization People and Earth to provide workshops turning what could be seedlings of interest in environmental activism from Colombian youth into full-fledged community campaigns that solve the root cause of local environmental issues.

Do you have an idea to speak up and lift up others? We encourage you to apply for a grant. We are always looking to support projects that are making the world a better place.

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A “magic” approach to scoliosis

This article was written by Allison Jones and originally appeared in the Portland Monthly 2017 Kids’ Health Annual magazine.

Early detection and new treatment methods help doctors treat the spinal condition using magnets – and fewer surgeries. 

Some curves in life are great – the curve on a mountain road that leads to a great view, or curveballs from a star baseball pitcher – while other curves, like a spine that bends from side to side, can mean trouble for a growing body. And while some cases of scoliosis are congenital (meaning children are born with vertebral curves) or neuromuscular (stemming from cerebral palsy, spina bifida or other conditions), about 80 percent of scoliosis cases are idiopathic – doctor speak for “we don’t really know why it occurs” – and tend to develop during puberty.

According to Dr. Christina Sayama, pediatric neurosurgeon at OHSU Doernbecher Children’s Hospital, both parents and primary care physicians should be on the lookout for markers of this condition, which impacts up to 9 million Americans.

“Early detection is key to avoiding surgery or complications with the heart and lungs,” says Dr. Sayama.

Scoliosis tends to run in families, so be sure to speak to your pediatrician about any family history of spinal conditions, and watch for the development of uneven shoulders or hips, an unusual gait or a spine that curves to one side when a child bends over.

“Once scoliosis is suspected, the gold standard of diagnosis is an upright spinal X-ray – and anything greater than 10 degrees of curvature is considered scoliosis,” explains Dr. Sayama. “Up to 20 degrees is considered mild; between 20 and 40 degrees, many neurosurgeons and orthopaedic doctors will recommend using a brace; and I will recommend surgery for a curve greater than 45 degrees.”

For growing bodies with mild scoliosis, Dr. Sayama often recommends physical therapy and core strengthening in addition to the proven strategy of wearing a brace.

“The longer a child wears the brace every day, the more likely they are to succeed in keeping the curve from progressing and needing surgery,” she explains.

And what about when surgery is necessary? In the past, a severe scoliosis diagnosis meant multiple surgeries – every 6-9 months – to lengthen growing rods that guided the spine into a healthier position. Thankfully, a new treatment is drastically reducing the number of surgeries necessary for little ones. Called the Magec Growing Rod System, the technique requires an initial surgery to implant temporary growth rods that can be lengthened by magnets from outside the body until a child reaches skeletal maturity. That means less time in the hospital, and more time practicing those curveballs.

If you’re concerned your child may have scoliosis, talk with your pediatrician or call OHSU Doernbecher Children’s Hospital at 503 346-0640

 

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 Abstract

INTRODUCTION:

Scoliosis is lateral curvature of the spine greater than 100 accompanied by vertebral rotation. The prime risk factors for curve progression are a large curve magnitude, skeletal immaturity and female gender. The curve progression can be recorded by measuring the curve magnitude using the Cobb’s method on radiographs.

AIM:

To assess the effect of task oriented exercises based on ergonomics on Cobb’s angle and pulmonary functions on one year outcome of Adolescent Idiopathic Scoliosis(AIS) (defined as curves < 150 for thoracolumbar region and < 200 for thoracic region).

MATERIALS AND METHODS:

A total of 36 patients were enrolled in the study and 18 patients in each group (experimental and control group) were allocated randomly. The subjects in control group underwent spinal strengthening exercises, active self-correction and breathing exercises, whereas subjects in the experimental group followed task oriented exercises based on ergonomics in addition to exercises for conventional group for one year. Chi square test was used to compare the categorical/ dichotomous variables between the groups. Unpaired t-test was used to compare continuous variables between the groups at pre and post intervention. Paired t-test was used to compare the changes in continuous variables from pre to post intervention within the group.

RESULTS:

Forced Vital Capacity (FVC) was found to be significantly (p=0.001) higher in experimental group (2.68±0.37) than control group (2.20±0.41) at post-intervention. Force Expritatory Volume 1 (FEV1) (p=0.01) and Vital Capacity (VC) (p=0.002) were also found to be significantly higher in experimental group compared to control group at postintervention. Also, there was significant (p=0.001) mean reduction in Cobb’s angle from pre to post intervention in both the groups being higher in Experimental group than control group.

CONCLUSION:

The task oriented exercise protocol benefited patients with AIS which had a significant improvement of their pulmonary functions and Cobb’s angle.

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 Abstract

Sarcopenia is recognized as a major health problem among older adults. This syndrome is associated with serious health consequences in terms of frailty, disability, morbidity and mortality. The aim of this study is to review sarcopenia and its impact on quality of life (QoL). MEDLINE database was searched from January to March 2016 using predefined search terms “sarcopenia”, quality of life”. Based on extensive literature search, 32 articles were identified while only 6 studies met the inclusion criteria and were associated with sarcopenia and QoL. Quality of life level was measured using generic self-reported tools; the Medical Outcomes Survey Short-form General Health Survey (SF-36) in 4 studies and EuroQol-5D instrument (EQ-5D) in 2 studies. Subjects with sarcopenia demonstrated a significantly high proportion of problems relating to several dimensions of QoL. More studies based on Sarcopenia and QoL are needed. Although the impact of sarcopenia on QoL was assessed in all studies with QoL generic instruments, it would be more insightful to utilise a disease-specific quality of life questionnaire, such as the SarQoL for sarcopenic subjects.

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 Abstract

BACKGROUND:

Scoliosis X-rays are the gold standard for assessing preoperative lumbar lordosis; however, particularly for flexible lumbar deformities, it is difficult to predict from these images the extent of correction required, as standing radiographs cannot predict the thoracolumbar alignment after intraoperative positioning.

OBJECTIVE:

To determine the utility of preoperative MRI in surgical planning for patients with flexible sagittal imbalance.

METHODS:

We identified 138 patients with sagittal imbalance. Radiographic parameters including pelvic incidence and lumbar lordosis were obtained from images preoperatively.

RESULTS:

The mean difference was 2.9° between the lumbar lordosis measured on supine MRI as compared to the intraoperative X-rays, as opposed to 5.53° between standing X-rays and intraoperative X-ray. In patients with flexible deformities (n = 24), the lumbar lordosis on MRI measured a discrepancy of 3.08°, as compared to a discrepancy of 11.46° when measured with standing X-ray.

CONCLUSION:

MRI adequately determined which sagittal deformities were flexible. Furthermore, with flexible sagittal deformities, lumbar lordosis measured on MRI more accurately predicted the intraoperative lumbar lordosis than that measured on standing X-ray. The ability to preoperatively predict intraoperative lumbar lordosis with positioning helps with surgical planning and patient counseling regarding expectations and risks of surgery.

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 Abstract

BACKGROUND:

In spinal deformity treatment, the increased utilization of 3-column (3CO) osteotomies reflects greater comfort and better training among surgeons. This study aims to evaluate the longitudinal performance and adverse events (complications or revisions) for a multicenter group following a decade of 3CO.

OBJECTIVES:

To investigate if performance of 3CO surgeries improves with years of practice.

METHODS:

Patients who underwent 3CO for spinal deformity with intra/postoperative and revision data collected up to 2 yr were included. Patients were chronologically divided into 4 even groups. Demographics, baseline deformity/correction, and surgical metrics were compared using Student t -test. Postoperative and revision rates were compared using Chi-square analysis.

RESULTS:

Five hundred seventy-three patients were stratified into: G1 (n = 143, 2004-2008), G2 (n = 142, 2008-2009), G3 (n = 144, 2009-2010), G4 (n = 144 2010-2013). The most recent patients were more disabled by Oswestry disability index (G4 = 49.2 vs G1 = 38.3, P = .001), and received a larger osteotomy resection (G4 = 26° vs G1 = 20°, P = .011) than the earliest group. There was a decrease in revision rate (45%, 35%, 33%, 30%, P = .039), notably in revisions for pseudarthrosis (16.7% G1 vs 6.9% G4, P = .007). Major complication rates also decreased (57%, 50%, 46%, 39%, P = .023) as did excessive blood loss (>4 L, 27.2 vs 16.7%, P = .023) and bladder/bowel deficit (4.2% vs 0.7% P = .002). Successful outcomes (no complications or revision) significantly increased ( P = .001).

CONCLUSION:

Over 9 yr, 3COs are being performed on an increasingly disabled population while gaining a greater correction at the osteotomy site. Revisions and complication rate decreased while success rate improved during the 2-yr follow-up period.

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Updated / Wednesday, 27 Sep 2017 10:56

There are five spinal surgeons in Crumlin with only three theatre days, says the Scoliosis Advocacy Network

A spokesperson for the Scoliosis Advocacy Network has said the theatre at Our Lady’s Children’s Hospital, Crumlin will have to be opened for five days a week, if the Government and Health Service Executive are to fulfil a commitment to drastically reduce waiting lists for scoliosis surgery.

Co-founder of the Scoliosis Advocacy Network Michelle Long said there are five spinal surgeons in Crumlin with only three theatre days.

She said she did not know why this was the case and only management at the hospital could answer that question.

Speaking on RTÉ’s Morning Ireland, Ms Long said outsourcing now seemed to be the preferred method of clearing, with suitable children being sent abroad for surgery.

She said this option was unfair to parents and children, who feel under pressure to travel because they cannot get a surgery date in Ireland.

“If you don’t go to Germany for example, there’s no surgery date free in Ireland and it’s emotional blackmail. Parents are really left with no choice if they’re told that if they stay in Ireland, there is no date,” she said.

Ms Long said there would be a backlog of surgeries carried over to 2018, unless a considerable number of children went abroad for treatment.

report from the Ombudsman for Children in March found that children have been experiencing significant waiting times for scoliosis surgery, up to 18 months in some cases.

Speaking at the Oireachtas Joint Committee on Health todayMinister for Health Simon Harris said waiting lists for scoliosis, even in ‘Celtic Tiger’ times, had been unacceptably high for children.

He said an additional €10 million had been provided along with consultant posts and theatre nurses.

Mr. Harris said there were more surgeries in Temple Street and Crumlin hospitals this year compared to 2016.

He defended international outsourcing to deal with the backlog, saying that while outsourcing was not the answer, it was necessary to reduce waiting lists.

“I don’t apologise offering parents an additional route,” he said.

 

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By Emily Harrison | 9/29/17 3:22pm

Michaela Jacobs is reigning Miss Florida 2017, she is past Miss Teen USA 2016, and as of this year, a member of Elon’s class of 2021.

With such big accomplishments in the pageantry world, it may seem like Jacobs is experienced in participating in beauty pageants. However, this is not the case. Jacobs first entered a beauty pageant on a whim at seventeen and proceeded to win on a national level.

Jacobs still describes the event as a surreal moment.

“There is that initial moment where you are like ‘OMG,’ is this me?’” Jacobs said. “Did this really just happen? Just utter elation. And sheer joy. I still can’t believe it.”

At her first pageant, when Jacobs became the Miss Teen USA 2016, her career as a beauty pageant queen started. She traveled across the United States, where she met other important figures in the pageantry world. From there Jacobs added to her growing resume the title of Miss Florida 2017, which she still holds.

Jacobs says the pageantry world changed her life for the better.

“I was so pleasantly surprised,” Jacobs said. “It really has shaped my path, who I am and the choices that I’ve made. I am just so honored to be involved in a community of women who are so driven, so passionate and so committed to their platform topics — whatever they may be.”

Jacobs acts as an ambassador for beauty pageant queens across the United States, and platform topics is one of the requirements of being a pageant contestant. Platform topics are causes that contestants choose to stand for and represent while competing.Throughout her years competing, Jacobs has represented two causes, one of which being The Crown Cares. The Crown Cares, or otherwise known as Creating A Respectful Environment in School, is specifically designed to promote awareness about bullying in schools in students of every grade. Through social clubs, anti-bullying books, and various craft activities, Jacobs says there is so much more to being a beauty queen than meets the eye; it’s about being a role model.

“I like to say there are ‘trials and triumphs’ and I know that defines my story. I’ve had so many trials in my life leading up to this point,” Jacobs said. “That the triumph that I have to now hold the title of Miss Florida and to encourage young girls who are going through trials of their own, that there’s hope for them.”

Jacobs has faced many trials throughout her life including scoliosis. She was first diagnosed during her freshman year of high school, and was told to not dance during the talent competitions.

“When I was diagnosed I was initially told that I shouldn’t dance, that it wasn’t healthy for me, that it wasn’t recommended,” Jacobs said. “But it was my passion and how could I walk away from that?”

Instead, Jacobs uses her scoliosis as her strength, using it to connect with children who also live with the condition. She is an ambassador of Scoliosis Awareness and uses her position as a beauty pageant queen to gain more awareness for the cause. For Jacobs, the point of being a beauty pageant queen is so she can help encourage little girls all over the country.

“Now I can encourage other girls who are facing issues of their own whether it is with a health issue like scoliosis, a mental issue that they are facing, or whatever it might be, that there is hope for them and that they can overcome it,”  Jacobs said. “They can be the best versions of themselves too.”

However, being a beauty pageant queen isn’t just about bettering others, but also herself. Jacobs suffered from insecurity through her middle school and high school years, and being a beauty pageant queen gave her the confidence boost she needed to hold her head up high.

“It really just taught me that the only thing holding me back is myself. That my fears can’t stifle my passions,” Jacobs said. “And once I was able to overcome those and then win that national title, the sky was truly the limit.”

For now, Jacobs has decided to take a short break from the pageant world to focus on her education in Musical Theatre at Elon University. Elon currently has one of the most prestigious Musical Theatre Programs in the country with over 800 applicants applying and only 20 accepted. As a member of this elite group, Jacobs says she is happy to be here, but will not forget her pageant roots as it is a part of her now.

 

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Wirral schoolgirl Julia Carlile speaks to the ECHO about her recovery.

Teenage Britain’s Got Talent star Julia Carlile is set for her first dance performance since Simon Cowell funded her £175,000 spinal operation.

The major step on the West Kirby 15-year-old’s journey to recovery comes after she returned home from America late last month – having undergone the two rounds of major life-changing surgery paid for by the TV mogul.

If the schoolgirl had not accessed the vital treatment and instead been tended to in the UK for her scoliosis condition she says it would have left her “stiff as a board” and unable to fulfil her passion for dance.

Julia captured the nation’s hearts with her ongoing health battle and incredible dancing in the BGT finals with her troupe MerseyGirls.

After the operations, around six weeks ago, Julia said she was still in a lot of pain even when lying on the sofa.

However two weeks ago that all began to change with more movement returning and the soreness in her body easing.

Now, in her excitement at being able to dance again, she has even been practising moves in her lounge – despite her mum telling her to rest and be careful.

In an exclusive chat with the ECHO, Julia said: “I’ll be able to dance in another two months which is crazy because with the other surgery I just wouldn’t have been able to.

“In the future MerseyGirls can carry on dancing for ever and ever, which is what we always dreamt of, so the surgery is literally the best thing that has ever happened.”

Julia says the dance troupe have a lot of plans for the new year after her first performance back with the team but that’s all being kept under wraps at the moment.

The dancer was diagnosed with scoliosis at six years old, she says the condition “slowly got worse and worse” and doctors made a number of attempts to slow her spine from curving, including the use of back braces.

She said: “It wasn’t too bad at first but then I started to get a really big rib hump and my whole body was on a wonk.

“That meant I couldn’t do certain dance moves which really started to affect my life.

“Dancing was really hard, I couldn’t do certain moves and I got really mad. I just wanted it to be gone and be like everyone else.

“I was in a lot more pain so surgery was the only answer. However, the condition made me different and it has got me where I am today.”

In the two years before Julia was due to have diffusion surgery, an operation that would have left her unable to dance, she said she competed in every dance competition she was able to, despite being in “a lot of pain”.

Julia said: “My surgery was going to be just after BGT. I thought that was the last dance I was ever going to do.

“Obviously that all changed. We found this surgery in America a few years ago that could carry out an operation on my back which would still allow me to dance.

“We looked into it but could never afford it. That was completely gone to me.

“Then Simon Cowell read up on it and offered to pay for the surgery which was crazy, it is unreal still now and we cannot thank him enough.”

Before the operation, the angle of Julia’s back curve was more than 100 degrees but it was corrected to around 50.

Julia added: “I had two major surgeries and they halved the curve in my spine. I am really happy with the results.

“I feel like I’m starting to get better and I’m just looking forward to performing with MerseyGirls now – I am itching to dance!

“It’s been really crazy since I’ve been back from America.

“We went to the Reality TV Awards and I was back with MerseyGirls and that felt really good. It was like starting a normal life again being back with the girls.”

 

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September 26, 2017

PHILADELPHIA — According to a presenter at the Scoliosis Research Society Annual Meeting, spinal osteotomy may improve quality of life for patients with ankylosing spondylitis kyphosis.

“From our series of clinical research, we had to know what is the sagittal decision-making for these kinds of patients, the proper osteotomy and osteotomy site, and how to calculate the correct angles,” Yan Wang, MD, said during his presentation.

In a retrospective study, Wang and colleagues reviewed information for 448 patients with ankylosing spondylitis kyphosis who underwent spinal osteotomy. Patients either underwent one-level transpedicular spinal osteotomy or two-level transpedicular osteotomy from T12-L3, based on the apex of kyphosis, deformity type and neurological conditions. Radiological parameters were measured preoperatively and postoperatively. Investigators recorded any complications.

Researchers found patients were able to walk with horizontal vision and lie on their backs postoperatively. In patients who underwent two-level osteotomy, the chin-brow vertical angle improved from 68.3° to 8.2°. This measurement went from 46.2° to 4.2° in patients who underwent one-level osteotomy. Investigators noted that in patients who underwent two-level osteotomy, the mean sagittal balance improved from 29.4 cm to 8 cm. This went from 18 cm to 4.3 cm in those who underwent one-level osteotomy.

At the superior site of the osteotomy, the amount of correction in the two-level group was 27.7° and was 42.1° at the inferior site. In the one-level group, it was 46.2°. There were no major complications in the study. Investigators found 32 patients with one or two complications, which included transient neurological deficit, vascular laceration bleeding, infections, postoperative low back pain, a broken spinal rod, pedicle screw pull out, non-fusion at the osteotomy site and cerebrospinal fluid leaks.

“Two-level spinal osteotomy show[s] risk tendency of higher operation-related complications,” the researchers wrote in their abstract. – by Monica Jaramillo

Reference:

Wang Y, et al. Paper #39. Presented at: Scoliosis Research Society Annual Meeting; Sept. 6-9, 2017; Philadelphia.

Disclosure: Wang reports no relevant financial disclosures.

 

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