Beyond a Curved Spine is a Nigeria-based nonprofit whose goals are to raise scoliosis awareness and provide support for people with scoliosis ('Scoliwarriors', to borrow their term).

BACS co-founder Abimbola Oladapo very kindly agreed to answer some questions from the Scoliosis SOS team and tell us a little bit more about her own scoliosis story, as well as the past, present and future of Beyond a Curved Spine.

First of all, please tell us a little about yourself - who are you?

My name is Abimbola Oladapo and I'm such a lover (haha - that's the one thing I like to be labelled as). I'm a happy person, scoliosis warrior and Nigerian.

I am also the co-founder of a nonprofit called Beyond a Curved Spine - where we advocate for scoliosis awareness - and I occasionally blog at onepowerwoman.com. Some of my favourite things to do include unravelling new places and making strangers smile.

What's your experience with scoliosis?

My scoliosis story started in 2004. I was about 11 years old and in Year 9. My sister noticed my back wasn't looking "normal" - it was slanted, and it showed in the way I walked. At first, she thought it was as a result of bad posture ("swag") and constantly cautioned me to "stand / walk straight and stop spoiling my posture".

Everyone thought I was trying to be cool, when it was simply all shades of scoliosis symptoms. A few months down the line...and my back was looking like a letter 'S'. At this point, it was obviously more than bad posture. I had just returned from boarding school for the Easter holidays. I'll never forget: my mum took me to the hospital and it was the first either of us would hear of scoliosis.

It's been fifteen years since then. I haven't gotten any treatment apart from bracing and exercising, although my curve isn't mild. I think I've kind of gotten used to living with an 'S' on my back - and the good, the bad and the ugly that comes with it. Sometimes I just really want to get out of my skin; other times, I feel like I've got my own back.

Overall, I think I'm at that place where I'm intentionally stronger than scoliosis. I'm positive that someday and soon, I will be scoliosis-free!

You came to visit the Scoliosis SOS Clinic some years ago. What did you think?

Yes, in 2011. I was visiting family in London and we'd found the Scoliosis SOS Clinic on Google. It looked really good online, so we booked an appointment and visited the clinic - I've actually still got my consultation report!

The clinic looked even better in real life. The facility was great, the staff were friendly, and reading testimonials from Scoliwarriors who'd been through the treatment was really encouraging!

I think the treatment Scoliosis SOS provide is gold (ScolioGold - ha!), and I'll advise anyone who can afford it to give it a try.

What inspired you to start Beyond a Curved Spine?

A number of things, actually. After being diagnosed with scoliosis in high school, I was pretty much left alone, with no resources, no information, nothing. I'd gotten a back brace from the national orthopaedic hospitals here in Nigeria, but that was about it. And it was pretty awful! I didn't know how to care for my brace or what activities to avoid. I resorted to emailing doctors abroad and reading stuff on Google.

Fast-forward to many years later, after I'd finished university. I started to notice more people with scoliosis symptoms. I also realised there was a huge gap! No one was talking about scoliosis in Nigeria, yet many people suffered from it. Also, there was (and still is) a cultural belief that scoliosis patients - popularly referred to as 'hunchbacks' - are suitable candidates for money rituals, because the 'hump' on their backs is as a result of stored-up mercury that creates money. I pondered a lot about these issues.

Back in high school, I noticed a schoolmate's back was looking 'funny' while in the bathroom. I alerted her immediately, and because of this, her parents were able to immediately seek information and help, which resulted in a significant control in curve growth. This schoolmate became the co-founder of Beyond a Curved Spine.

All of the above factors, I believe, make up the foundation upon which BACS was established. We are driven by the notion that:

• Spreading awareness will dispel cultural myths.
  
  
• Early detection gives the best prognosis.
  
  
• Every scoliosis warrior needs a support community rooted in love and strength - no one should walk this journey alone.

You've made it your mission to raise scoliosis awareness. How are you achieving this?

Raising scoliosis awareness is such a broad objective! However, we do try to take it one step at a time. Following our famous slogan - "raising scoliosis awareness, one city at a time" - we execute awareness projects in selected communities each time. For example, in 2018, we targeted secondary schools (based on the target age group 10-16) in some Local Government Areas in Lagos, Nigeria. We did a tour around a number of schools in the Yaba region alone, and we reached over 5,000 students.

This year, we're running a '5,000 for 5,000' campaign with the goal of distributing 5,000 infographics across 5,000 public spaces (schools, primary health centres, etc.) in Nigeria.

Apart from these targeted projects, we raise awareness via social media, traditional media (radio, newspapers, blogs and TV features), and at events/gatherings where we're given the opportunity to share.

What are Beyond a Curved Spine's goals for the future?

Although plans may be subject to future tweaks, our goals can be summarised into three:

• To ensure that every household in Nigeria is scoliosis-aware.
  
  
• To facilitate support - mental support, resource materials, and accessibility to quality treatment - for scoliosis warriors in this part of the world.
  
  
• To advocate for improved and affordable healthcare on behalf of Scoliwarriors in Nigeria.

Finally, what advice would you give to someone who has just been told they have scoliosis?

Don't panic! You will be fine, you will still look good, you will meet someone who adores you silly, and you will inspire other people with your story!

Now that you've been diagnosed, seek knowledge! Talk to your doctors and other professionals. Ask questions. Get to know all you can about your condition, and get treatment early! I like to say early diagnosis is a life saver - literally!

Also, be sensitive to your body and your curve. Take note of changes, pain, and how you feel. Be serious with your treatment and medical appointments. And never ever underestimate the power of a support system! Join a scoliosis support group - surround yourself with positive vibes and positive people who are readily available to walk you through this journey.

And what advice would you give to that person's family and loved ones?

Being present is healing! As much as you can, be there for the person. Listen when they need to share. Listen when they say they're tired. It's nice to do some research in order to better understand what they might be going through. Hold their hands through treatment. Just stay supportive and loving!

Be careful with words. Avoid using words like 'hunchback', 'deformity', 'disease' or 'bent'. 'Curvy' is a safe word to use, all the time.

Be caring, not pitying. While it's awesome to always watch out for Scoliwarriors and help them with physical tasks, you should never throw a pity-party around them. Treat them like 'normal' human beings, because they are normal - only curvy (and curvy is beautiful, by the way!). The keywords are compassion and thoughtfulness, not pity or condescension.

Thanks so much to Abimbola for her thoughtful, insightful answers. Be sure to follow @beyondacurvedS on Twitter and visit their website for more information.

More Q&A posts:

• Leah Stoltz, Founder of Curvy Girls Scoliosis
• Rachel Mulvaney, VP of Curvy Girls Scoliosis
• Louise Laurie, Scoliosis Blogger
• @scolilife, Scoliosis Tweeter

The World Wide Web makes it relatively easy to find factual information about scoliosis, its symptoms, and the available treatment options. But fictional tales about people with scoliosis are a little harder to find.

Today (11 June) is Empathy Day, and with the accompanying #ReadForEmpathy campaign, the organisers are hoping to highlight the power of stories to help us understand each other's lived experiences. In that spirit, then, here's our all-ages guide to stories about scoliosis and what it's like to live with a curved spine:

Scoliosis Books for Children

Ideal for younger readers, these books can be a great aid for parents who are looking to help their young children understand scoliosis and the effects it can have on one's body. Better still, they also help to highlight the fact that a scoliosis diagnosis isn’t the end of the world, and that courage and perseverance can help to overcome even the biggest obstacles.

Being Grace by June Hyjek

Ideal for educating young children about the ins and outs of scoliosis, Being Grace follows the story of a Grace, a young giraffe who has a curved neck.

As in the Christmas story of Rudolph the red-nosed reindeer, Grace the Giraffe is singled out and ridiculed for being different. Despite this, Grace's crooked neck allows her to do things the other giraffes can't.

Grace ultimately learns to be happy in her own skin, accept her differences, and appreciate the way they make her unique. The author June Hyjek has scoliosis herself, adding authenticity to the story and its message.

View on Goodreads >>

The Bravest Thing by Donna Jo Napoli

The Bravest Thing centres around pet-loving 10-year-old Laurel and her pet rabbit. When the rabbit has babies, the rabbit's unwillingness to feed her offspring leaves Laurel (who has scoliosis) to take the lead and keep them healthy herself.

The book focuses on optimism in the face of adversity, providing a good introduction to the effects of scoliosis for children.

View on Goodreads >>

There's an S on My Back by Mary Mahony

Mary Mahony’s 1999 book There's an S on My Back is a great way to educate pre-adolescent readers about the implications of scoliosis while also reinforcing hope, instilling courage, and dispelling anxiety.

Written as a first-person narrative from the perspective of lead character Maisey MacGuire, There's an S... provides children with an enlightening insight into scoliosis, from diagnosis to treatment, including brace fitting and the social situations around it.

View on Goodreads >>

Scoliosis Books for Older Kids & Teens

For older children who have just entered their teenage years (or soon will), the following books provide a more mature analysis of scoliosis while still effectively maintaining engagement in younger readers. Centred around early adolescent characters, these books are a great way to improve a child's knowledge of scoliosis while still capturing their imagination.

Abby's Twin by Ann M. Martin

Part of the Baby-Sitters Club series, Abby's Twin tells the story of twin sisters Abby and Anna. Anna is diagnosed with scoliosis after a routine school screening, and the twins are left to come to grips with the revelation in their own way, with Abby's excessive attempts to comfort her sister ultimately leading to a falling out.

Bridging the gap between children's literature and teen reading, Abby's Twin is a good introduction to scoliosis for young teens and pre-adolescents, highlighting the importance of communication and family.

View on Goodreads >>

Braced by Alyson Gerber

Braced is the debut novel from Alyson Gerber (who has scoliosis herself). It tells the tale of Rachel Brooks, a 7th-grade student with a place on the school soccer team, a crush on a boy named Tate, and a great year ahead of her...until she's told that she has to wear a scoliosis brace for 23 hours a day.

Told from an authentic and honest perspective, this heartfelt story recounts the trials and tribulations of a maturing teen coping with scoliosis, with great underlying messages of compassion and triumph over adversity.

Published in 2017, Braced came as a welcome modern addition to the realm of scoliosis fiction, and it has been repeatedly praised online as a great read for teens and young adults alike.

View on Goodreads >>

Dear Isaac Newton, You're Ruining My Life by Rachel Hruza

Another recent publication to add to the growing list of scoliosis novels, Dear Isaac Newton... was originally published in early 2018 and follows the story of Truth Trendon, a 12-year-old with scoliosis.

The main protagonist in this scoliosis story aims to keep her scoliosis a secret from her classmates. Of course, the lies soon start to snowball, and disaster looms...

Touching and quick-witted, this book is full of adolescent angst and important life lessons, with the scoliosis theme prevalent throughout. Another great read for early teens.

View on Goodreads >>

Straight Talk with the Curvy Girls by Theresa E. Mulvaney and Robin Stoltz

Billed as 'a journey into the trials, tribulations and triumphs of child and adolescent scoliosis', Straight Talk features contributions from a number of young people with scoliosis (and their parents). Most of the other books on our list are fictional, but if you're looking for real-life tales of what it's like to grow up with scoliosis, this one is a must-read.

You can order a copy of Straight Talk with the Curvy Girls from straighttalkscoliosis.com. We'd also strongly recommend reading our interviews with Curvy Girls founder Leah Stoltz and vice president Rachel Mulvaney, both of whom have been living with scoliosis since childhood.

View on Goodreads >

Young Adult Books About Scoliosis

These books focus on a variety of themes and plotlines, and while they are predominantly aimed at young adults, they are just as suitable for those that fall outside of that category, providing a good literary experience for adults too - particularly those with an interest in scoliosis.

Deenie by Judy Blume

Perhaps the most famous book on this list, Deenie is considered somewhat of a cult classic, achieving both critical acclaim and controversy.

First published back in 1973, Deenie has seen its fair share of controversy, primarily due to its sexual references. As a result, Deenie has been banned in countless schools, even landing on the American Library Association's list of the '100 Most Frequently-Challenged Books' in the 1990s.

However, this was nothing new for author Judy Blume, who has had numerous other books on the same list over the years. And none of this has impacted the book's popularity; Deenie is still held in high regard and frequently cited as a 'coming of age' classic, and it's a great scoliosis story to boot.

View on Goodreads >>

Mannequin Girl by Ellen Litman

The second novel from Ellen Litman, Mannequin Girl is another coming-of-age story, but this one is set in 1980s Moscow.

The action - which takes place within a boarding school that's specifically for children with scoliosis - centres around lead character Kat, who enters first grade at the age of six as the book begins. We then see Kat's experiences over the eight years that follow.

Themes of identity, independence and rebellion emerge; Litman herself grew up in Moscow, allowing her to draw upon her real-life experiences for a narrative that's authentic, engaging and heartfelt despite being written in third person.

View on Goodreads >>

Heaven Sent by S.J. Morgan

The most recent entry on this list, Heaven Sent is the debut novel of British ex-pat S.J. Morgan. A trained occupational therapist, Morgan has real knowledge of scoliosis, and she uses this knowledge to great effect throughout Heaven Sent.

Another coming-of-age novel, relationships are the key theme here, with particular focus on friendship, family and love. The well-developed characters and thought-provoking narrative make Heaven Sent a solid read that's even more appealing to those with firsthand experience of scoliosis.

View on Goodreads >>

Scoliosis SOS is a specialist clinic in London, UK for people with scoliosis and other spinal conditions. Learn more about us here, and if you'd like to arrange a consultation, please don't hesitate to get in touch.

As you may already be aware, June is Scoliosis Awareness Month (culminating in International Scoliosis Awareness Day on Saturday 29 June).

If you're looking to help fly the scoliosis flag this month, there are lots of ways to help raise awareness - here are just a few ideas to get your cogs turning:

1. Social Media

It's no secret that social media is an incredibly powerful tool. This applies just as much to your personal social media accounts as it does to those owned by businesses, brands and celebrities.

If you want to get the word out to your friends, followers and family members, a simple Facebook update, tweet or Instagram post can go a surprisingly long way. Including a 'please share' request within your post will encourage people to spread the word to their own social spheres.

2. Flyers

If you're not big on social media, offline methods can work too. Printed flyers can be extremely impactful when it comes to informing and educating your community.

Producing flyers can be surprisingly economical, too - particularly if you shop around. Once you've got a stack of flyers ready, distribution can be as simple as standing in the centre of town and handing them out. You may also be able to place your flyers in local cafés, shops and other locations (but be sure to ask permission first).

3. Viral Challenges

Remember the ALS Ice Bucket Challenge? It was a sensation back in 2014: countless people, including a number of politicians and celebrities, shared videos of themselves getting soaked in order to raise awareness and funds for motor neurone disease charities across the globe.

We're not suggesting that you subject yourself to a bucket of ice-cold water, but you could definitely look to the viral success of the Ice Bucket Challenge for inspiration. Why not think of your own unique challenge, give it a catchy name, and get filming? Then post the video online, challenge three of your friends, and see where it leads!

4. Posters

A memorable, well-designed poster can be a great way to get a point across. If you're not much of a designer yourself, it's well worth paying a professional to put something together for you - posters work best when they're really eye-catching!

Strategic placement is important to make sure your poster is seen. Ask you family and friends to help you get your posters in densely-populated, high-footfall areas like busy streets, community centres, and places of business.

5. Speeches

If you're a confident public speaker, Scoliosis Awareness Month is a great time to put that talent to use. Giving a talk at - for example - a local school is a superb way to get the message out to people who might not otherwise have heard it. This is especially true if you yourself have scoliosis and can comment on what it's like to live with a curved spine.

If appropriate, you could even follow up your speech with a collection bucket to make the most of your platform and raise funds for a scoliosis charity of your choosing.

6. Merchandise

Pens, badges, hats, T-shirts...branded merchandise is a great way to promote a cause, and if you can afford it, you may want to consider using customised merch to raise awareness of scoliosis.

You could give your merchandise away for free as a promotional exercise, or sell it to raise funds for a worthy charity - either way, don't be afraid to get creative!

7. School / Work

Whether you're in school, university, or the world of work, getting your classmates / colleagues involved in your quest to boost scoliosis awareness will help you to cover a lot more ground.

Here's the golden rule: the simpler the task, the more likely people are to participate. Try to keep your requests nice and straightforward - for instance, you could encourage everyone to wear green for scoliosis, or change their email signature in recognition of Scoliosis Awareness Month. If you're feeling ambitious, you could even organise a bake sale and donate the proceeds to a scoliosis charity.

8. Local News

Even in this ultra-connected era, lots of people still read the local paper - or indeed the local paper's website.

Journalists are always looking for ideas, and they love local interest stories that focus on real people and the challenges they face. If you have struggled with scoliosis and achieved something special, now is the perfect time to celebrate it. In a world that can sometimes feel like it's bursting with bad news, a slice of positivity should be an easy sell that your local journos welcome with open arms.

More on Scoliosis Awareness Month   About Scoliosis SOS

Scoliosis is a condition that affects people from all walks of life. Countless people with scoliosis use social media, blogs and other media outlets to share their personal experiences and offer support to others.

Here are just a few scoliosis quotes from people who have dealt with their condition in the public eye:

Celebrities

A number of well-known public figures have used their positions of influence to raise awareness about scoliosis and to be positive role models for others with the condition.

Princess Eugenie of York, British Royal

Here's what Princess Eugenie said after her wedding to Jack Brooksbank, during which she wore a dress that showed off the scar from her spinal fusion surgery:

"I believe scars are like memories that tell a story on your body, that remind you of how strong you had to be, and that you survived to talk about it. Your scars are a way of communicating, and sharing a trauma can be healing in so many ways - it can release the stigma you might have given to yourself, and by talking about it, you can show people how they can heal too."

Kurt Cobain, American Musician

Here is an excerpt from an interview that the troubled Nirvana frontman gave in 1993:

"When I stand, everything is sideways, it's weird...I go to a chiropractor every once in a while...most people have a small curvature in their spine anyhow, though some people have it really bad and have to wear metal braces. It gives me back pain all the time. That really adds the pain to our music. It really does. I'm kind of grateful for it."

Usain Bolt, Jamaican Athlete

Here's what Bolt had to say when asked about his scoliosis in a 2011 interview with ESPN:

"When I was younger it wasn't really a problem. But you grow and it gets worse. My spine's really curved bad...but if I keep my core and back strong, the scoliosis doesn't really bother me. So I don't have to worry about it as long as I work hard."

 See Also: Famous People with Scoliosis

Scoliosis Influencers

We at Scoliosis SOS have been lucky enough to speak with a number of inspiring people who are working to raise awareness of scoliosis and provide support for those who have it. Here is some of their advice for people with scoliosis:

Leah Stoltz, Founder of Curvy Girls

"Talk about how you're feeling! Don't keep it bundled inside. Find support: a trusted friend, a parent, an online forum, Instagram page, Facebook group, book...there are so many ways to feel supported and to talk with other girls who are going though what you are going through."

Read Full Interview >

Rachel Mulvaney, Vice President of Curvy Girls

"Throughout my bracing years, I was told that my chronic back pain did not exist because scoliosis 'does not cause any pain'. I was one of many patients who was spoken to in this way. But after learning a programme [the Schroth method] that both validated and eliminated my pain, I was determined to spread the word. I wanted to make sure all Curvy Girl families had the opportunity to know that this treatment existed."

Read Full Interview >

Louise Laurie, Scoliosis Blogger

"Every case is different, but I would say that mindset is everything. I used to feel so down about my back, but I've realised that having scoliosis does not have to hold you back - you can achieve anything you put your mind to."

Read Full Interview >

@scolilife, Scoliosis Tweeter

"As cheesy as it sounds, things get better. When I was diagnosed, I thought my life was over - it was the biggest deal, and no matter what, everything seemed like bad news or just another complication to add to my growing list. But soon enough, you adjust to the brace. The X-rays become fun. The appointments become bonding time with your family. Your scoliosis becomes a point of pride rather than disappointment, and you become stronger and more independent because of it."

Read Full Interview >

Chloe Donhou, Spinal Fusion Patient

Chloe underwent spinal fusion surgery live on Channel 5 earlier this year, a spectacle that gave viewers a real insight into what scoliosis surgery actually entails. Here's something she said after sitting for a painting that was featured on scoliosis blog The Curvy Truth:

"I have always felt the need to cover up my scoliosis as I hated the way my back looked. Wearing clothes was difficult as I felt they sat weirdly on my back. I became so annoyed with myself that I couldn’t just accept it, so I felt that having this piece [a painting of her back] done would allow me to see that it really isn’t that bad after all. The painting is now hung up on my bedroom wall and I see it every day. Seeing it all the time really allowed me to come to terms with it - I accept who I am and I love me for it!"

If you are suffering from scoliosis, don't think you are alone. There are people all around who are willing to help and support you - for instance, take a look at our list of scoliosis support groups around the world.

Scoliosis SOS: Who Are We?   Book a Scoliosis Consultation