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scoliosis

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    Living With Scoliosis #ScoliosisAwarenessMonth

    June 25, 2018

    June is #ScoliosisAwarenessMonth and I felt it was necessary to be intentional about it this year.

    I don’t think I’ve ever shared that I have scoliosis with the internet. No reason, I didn’t feel it was necessary.

    I do have scoliosis- Mild scoliosis in simpler terms lol. If I’m being honest, I’m super grateful for mine because it isn’t so visible, the pain level is amazing compared to others, I don’t need surgery and its pretty manageable so that’s amazing.

    living-with-scoliosis

    If you’ve never heard about scoliosis, it is a sideways curvature of the spine that occurs most often during the growth spurt just before puberty. While scoliosis can be caused by conditions such as cerebral palsy and muscular dystrophy, the cause of most scoliosis is unknown. 

    Knowing that I deal with the mild version ,prompted me to ask other people dealing with scoliosis to share their experiences. I hope you guys learn a thing or two!

    Oyesimisola Fagbenro

    Discovered in 2012

    rareisbeautiful-rare-living-with-scoliosis
    Your Journey so far?
    My mom saw a swelling at the right side of my back one morning while I was dressing up and asked if I hit myself somewhere and if it hurt. Gradually she began to monitor it and after about a month, she decided we visited the Orthopedic hospital where X-ray was done and a brace was given.
    Being in senior secondary school ,wearing a brace under my school uniform was difficult, everyone wanted to know why and what it was. I was always very uncomfortable going out and was sad most of the time. My friends at home and school pitied me a lot cause of it.. A year later I travelled out of the country to get better treatment and got another brace, surgery was discussed and I was happy but my parents never wanted me to do surgery..
    “Scoliosis is not the end of the world. There are a lot of ways to be happy and comfortable in your own style..come out there and be different!”
    How has Scoliosis impacted your mental health?

    Coping with scoliosis wasn’t extremely terrible, I had to be conscious of how I walked so people wouldn’t notice I was bending to one side..standing for too long, sitting for too long, lying down in the same position for too long, carrying heavy things have been my major challenges. Mentally I was slightly affected , I never wanted to hang out because I’d be forced to wear my brace anywhere I was going.

    What’s the biggest misconception about scoliosis?

    In my opinion, scoliosis is misconceived to be caused by bad posture and I would say 50% of Nigerians are not aware of scoliosis.

    An advice to your fellow scolio warriors!

    Scoliosis is not the end of the world. There are a lot of ways to be happy and comfortable in your own style..come out there and be different!

    Busola
    Discovered in 2005 /15 years old.

    Your Journey so far?

    The journey so far has been interesting and eventful. I initially wasn’t sure what to expect but the realities of having to always wear a brace, dealing with the heat, sleeping in very specific positions, getting weird questions and all sorts of funny reactions from people, painfully set in and were quite a lot for me to take in as a teenager.

    How has Scoliosis impacted your mental health?

    I remember in my undergrad days it was hard for me to do things as basic as sitting or even standing without complaining of back aches, which people could not just understand. Some of these experiences began to affect me inwardly and my self-esteem began to plummet. I began to tag myself as limited. It took quite a while to get myself back on track and just accept my difference and take life for what it really was. I had scoliosis and I had to deal with it to the best of my ability, I had to realize that I could live the best life in spite of scoliosis. So I started taking my exercises more seriously, wearing my new braces as consistently as possible and I had to just keep pushing the limits of what my body could do.

    “One other thing that has helped that I have drawn strength from other people who are living there best lives with scoliosis. I got a lot of this from BACS! (@Beyondacurvedspine).”

    What’s the biggest misconception about scoliosis?

    As far as misconceptions go, I think one major problem in Nigeria is that a significant amount of people don’t even know that scoliosis is a thing. The few people that have an idea, don’t know the full extent of what the condition is. Many think it is a disease, which is not – it’s just a condition. I’ve had people confuse scoliosis with sclerosis, which are two entirely different conditions. Truth is, it is an idiopathic condition in most cases – nothing known caused it.

    An advice to your fellow scolio warriors!

    To Warriors out there, I’ll just say believe that you can live your best life possible. I have this sign in my room which says “you have been given this life because you are strong enough to live it” and basically that has in many ways motivated me. I think we should all always remember and believe this. One other thing that has helped that I have drawn strength from other people who are living there best lives with scoliosis. I got a lot of this from BACS! (@Beyondacurvedspine).

    Okonkwor Christian Oyor

    2011

    scoliosis-awareness-month

    Your Journey so far?

    It has been tough, my parents, especially my mum had a hard time accepting it. I struggle with it every day. At first, I wore big shirts to hide it, and I would look at my body in the mirror and it would seem strange to me.

    I am still not completely comfortable with the fact that I have scoliosis. Sometimes when I wear fitting clothes, I feel uncomfortable. However, I have no issues anymore with telling someone who stares too much or asks me what is wrong with my back what scoliosis is.

    I wore a Boston brace for about a year, it was torture for me, and I hated every moment of it. I eventually stopped wearing the brace, and currently I try to exercise, and tried physiotherapy for a while. As a medical student, it was difficult for me especially during my clinical rotations, sometimes my back muscles would rebel against the prolonged standing.

    “A lot of people think it is spiritual”

    How has Scoliosis impacted your mental health?

    Well, let’s say it has affected my body image. Like I said, I am still struggling to completely embrace my body, the way it is now and all. It contributed to my low self-esteem back then, but that is behind me now, it is just so difficult sometimes, it makes me feel vulnerable.

    What’s the biggest misconception about scoliosis?

    A lot of people think it is spiritual, especially my type of scoliosis. I was not born like that you see, mine happened during puberty…Idiopathic scoliosis is seen as a spiritual attack, and that is just annoying to me!

    An advice to your fellow scolio warriors!

    Don’t be ashamed of your body the way it is now, embrace it and own it. People will like you for you, and not for your curve. Never forget that.

    ANONYMOUS

    Discovered I had scoliosis when I was 13

    Your Journey so far?

    I never knew how big a deal it was until I got a Milwaukee brace 2 years later. It was worse for my parents, especially my Mom. I think the incidence has kind of defined her in so many ways. At first, the doctors said it was idiopathic (in line with the general consensus in the medical field), but amazingly my Dad, my brother and one of sisters have scoliosis. Because we didn’t have the facts that scoliosis could be hereditary, or that there were some viable treatment options apart from surgery, my brother’s curve got quite severe. At some point in my life, I just became indifferent, which only made matters worse, as I think the curve got worse and my health suffered for it.

    “It was worse for my parents, especially my Mom. I think the incidence has kind of defined her in so many ways.”

    I later began doing physical therapy through a traditionally trained therapist. It helped, but if he had involved a bit of science to his trade, he would have had more success with my treatment. I have discovered other ways of managing scoliosis (e.g. Schroth Method, Chiropractic Therapy, targeted exercises etc), but it is been a difficult journey because these centers are outside Nigeria and there are very few or no centers where they can manage scoliosis effectively in Nigeria at an affordable cost.

    My greatest pain is from the realization of how poor health care and health care related research is in Nigeria.  The doctors are actually trying their best, but without adequate funding, the medical field cannot give its best to the average Nigerian and health issues are like snow-balls, they keep getting bigger and bigger the more you do not address them.

    How has Scoliosis impacted your mental health?

    It pretty much crashed my self-esteem as a teenager. I was too ashamed to go out, but overtime I kind of embraced my situation and had a comical view towards it.

    What’s the biggest misconception about scoliosis?

    That scoliosis is caused by poor posture or carrying heavy things wrongly. This is not entirely true, carrying heavy objects might aggravate the curve, but there are many causes. Apart from congenital scoliosis and infections of the spine (usually due to cancer), there are many causes of scoliosis with some tending towards neuro-muscular issues.

    An advice to your fellow scolio warriors!

    My advice is, do as much exercise as your body will allow you regularly. I think that’s something I didn’t do in my younger days. With the right exercise and diet one can cope with scoliosis better.

    I’m definitely with “anonymous” on doing as much exercise as your body allows! Something safe for your back but effective to reduce the pain. Living with scoliosis is a journey but it can be a beautiful one!

    What do you guys think? I definitely Loved this! My first time interviewing people on the blog!

    PS: Shoutout to Beyond a Curved Spine @beyondacurvedspine on IG. They are a non governmental organization creating awareness for scoliosis!

    Did you know about scoliosis before reading this?

    Till the next post,

    Stay Rare! x

    Thumbnail image from google.com