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.
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