Tag Archives: Scoliosis Ireland

Bionic Woman X Her.ie

Today I am featured on Her.ie talking about body confidence. According to latest reports, up to 40% of us have problems accepting the way we look. We strive for an unrealistic and ‘perfect’ image of what the human body ought to look like. Thanks to the overwhelming sea of social media that keeps us afloat, we push our bodies to the limit to achieve these impossible body goals that are both impractical and undesirable. We want the tiniest waist, the smallest nose, and the peachiest bum: but how about giving your own unique body the love and care it deserves?

(to watch the video click HERE)

People often tell me how confident I am in myself, but beneath my courageous front was once a timid and anxious girl. I thought I was ugly. Since my teens I have struggled to accept the body that I was unfavourably given. I remember getting my body cast after my first operation -a Plaster-Paris cast that went around my entire torso- and walking down the street with my mam feeling like a monster. Everyone else was wearing the latest crop-tops while I had to buy t-shirts that were three sizes too big to cover my hideous cast. Holidays were a nightmare, especially at the beach or by the pool: if children weren’t staring and pointing, then their parents were.

Shopping was a disaster – I hated dressing-rooms because of the mirrors and lights. Clothes never fitted me correctly, and I didn’t want to see how deformed I was from the back, and I often left feeling totally depressed about it.

Because of the health challenges I have faced (and continue to face), and all the times that my body has had to go through recovery, I’ve learned to love my twisted little body. And now I wear my scars with pride because they not only tell a story, but they show how brave I’ve been the past ten years.

#EnjoyYourBody

Link: http://www.her.ie/life/her-say-the-bionic-woman/237173

Advertisements

International Scoliosis Awareness Day

Ireland will this year celebrate the second annual Scoliosis Awareness day on Saturday June 27th.

Growing up with Scoliosis was exceptionally difficult for me because I didn’t know anyone else who suffered with it – leaving me feeling like a total outcast. I had very little information available to me (bearing in mind the internet was still a *new* thing). There were few online forums, but the information presented on these sites was more-often-than-not false. I had nobody to ask the ‘what if’s’, and simple things like what things should I bring to hospital with me?

Until 2010 there was no direct organisation or body that offered help and advice to the thousands of Scoliosis sufferers across Ireland. Set up by Gary Farrell, Scoliosis-Ireland aims to educate those who don’t know about the condition, and help those on their journey with it. The disease can affect anyone at any age; both males and females, however it is most common among young girls going through puberty. Below are symptoms to look out for: early detection is key.

scoliosis symptoms

When I was diagnosed I never imagined that almost ten years later I would still be sharing my story. But the negatives that came from these horrendous surgeries have given me the strength to help others going through life-changing procedures. At twenty-one, being restricted in so many ways is a challenge that I never thought I would have to take on. But the human body is an extraordinary thing, and as humans we learn to adapt quickly. I think what people assume is that you go into have a procedure done and that’s it; you’re fixed. You don’t only have to prepare your body physically, but also get your mind ready to have your body cut, opened, pulled at, have foreign bodies put in, and be stitched up. Although the vlogs were difficult to do, the feedback I received is overwhelming and so rewarding knowing that I’ve helped people who are in the position that I was once in.

Scoliosis has appeared in Irish media a lot recently due to the lengthy waiting lists that young children and adults are being asked to wait. Luckily for me (or unluckily..), my spine had deformed so bad in such a short amount of time that I wasn’t left waiting long for my first surgery, or my subsequent surgeries thereafter. To put it into context: imagine trying to live a normal life with a broke bone; except this bone squeezes on all of your other organs, decreasing your lung capacity, producing crippling pain, and horrendous fatigue among other symptoms. Dr. Pat Kiely, one of Ireland’s leading spinal surgeons and founding surgeon of Straight Ahead has recently launched the ‘walk a mile’ initiative to raise funds for life-changing Scoliosis surgeries and cut the waiting-lists for children. Croí Cróga, an activity-based group focused on raising money for charities, have this year chosen Straight Ahead Ireland as their primary charity. They and Dr Kiely want everyone to ‘walk a mile’ for the children who cannot. If you would like to get involved all you have to do is walk a mile, upload a picture to your social media site, and text MILE to 50300 to donate €4; all of which goes towards funding Scoliosis surgeries and Straight Ahead.

#EnjoyYourBody

Bionic womam: my twist on life *part 1*

So last night I uploaded my very first video about my journey with Scoliosis and my surgeries and that. I don’t have access to editing equipment until Monday so I’ll make it up in the next installment where I’ll show you all my iMovie/Premier Pro mad skillz.

#EnjoyYourBody

Bionic woman: my twist on life

I try and use this space to share with you the best of the creative minds around our lovely city, but I want to share my story with you. This is not a sob story; but a bit of education and awareness.

Imaging waking up one morning to find your body has been twisted out of shape.

This is no rip-off horror story. The year is 2007, I was a thirteen year old tom-boy and I had been out playing football on the road the night before. I had as normal an up-bringing as the next person; living in a mad house with three brothers. It was Saturday morning and before my shower I stood looking at my skinny body in the mirror, picking out every little lump and bump to criticise. I noticed I was standing crooked; my shoulders and hips did not align and had a predominant hump on my upper back. I was completely crooked. My mum placed me on her bed and with her finger, she traced down my spine. To her horror, my spine had completely twisted over the other side of my body; I had miraculously felt no pain at all.

Left: my spine after my second surgery. Right: my spine after my third surgery

Left: my spine after my second surgery. Right: my spine after my third surgery

I was diagnosed with acute Idiopathic Scoliosis. Scoliosis is a condition that causes the spine to grow not straight, but to curve into an ‘s’ shape. The word Idiopathic simply means ‘unknown’ because there is no significant reason why the spine does this. Scoliosis is a rare condition that effects only 2 per cent of the population- mostly effecting girls during puberty. Doctors are under the influence that my body took a massive growth spurt while I was sleeping. My spine extended but had nowhere to go in my small body. Everybody has a natural curve of around 20 degrees in our spines- it’s what gives us our flexibility. Overnight, my spine twisted to over 70 degrees. I had such a deformity that clothes did not fit me and I could not carry a school bag. Treatment for Scoliosis can vary depending on the curve- Spinal fusion surgery is currently recommended when curve magnitude exceeds 40–45 degrees. Anything below this in children will require bracing so that the body pulls the spine back into place. I was due to have routine spinal fusion surgery to correct the curvature of my spine. It involved screwing titanium rods on each side of my spine which would support and correct the curve. However, not everything went to plan.

When the second rod was in place it hit a vital nerve which left me paralysed and caused me to lose every ounce of blood in my body. Eight litres of blood was pumped back into me. Thankfully, the power was restored to my arms and legs but I was now left with one limp rod connected to my spine, instead of two. The failure rate for these operations are very low- with one in every 500,000 failing. I just got lucky. Nine hours later, I woke up disorientated after being transferred to a hospital which had a superior intensive care unit. Recovery was hard; you have to learn how to walk, sit and even go to the toilet again. I was completely reliant on other people. I also had to wear a plaster-paris cast around my torso for six months. It was utter hell and unbearably itchy. I got on with my life and eight months later I was back in school and carrying on with teenage life. However to my disappointment, my one supporting rod snapped one day while I was on a trampoline. It was only when my parents noticed my curve returning that we realised something was not right.

I had a revision of spinal fusion in 2011, where the broken rod was mended and extended down to my lower spine. However no risks were taken, and it was decided to not try place another rod on the opposite side to avoid paralyses again. At seventeen, surgery was not what I wanted. With my leaving cert approaching, school became a misery. I now had to go through the process of learning to walk for a third time- trust me, it isn’t any easier. Thankfully there was no cast this time! You have to think positive though, I just wanted to live like a normal teenage girl. Life after two spinal surgeries was not too bad- I went back playing sports and returned to my one passion- horse riding. With my leaving cert complete I was now looking forward to college and life ahead of me. Yet I constantly suffered with pain which debilitated me. I received epidural injections every 2-3 months into my spine to relieve pain- but to no avail. My spine was leaning too far to the left side of my body, and my discs were crumbling away to nothing. Taking a lot of heavy medication did not help either.

At 20, I now had to make the decision to have further surgery or live in constant pain, unable to work and study.
On March 11th 2014 I had my third spinal surgery. This time however, I had my entire spine fused to my pelvis. This involved placing two more rods down from my spine into my pelvis- limiting my movement completely, not to mention leaving me with a scar that extends from the top of my spine to my bum. I am one of only a handful of people who have had this surgery in Ireland- and indeed the world.

March 2014- just minutes after waking up from surgery

March 2014- just minutes after waking up from surgery

walking for the first time after my third surgery

walking for the first time after my third surgery

I have very limited movement; I cannot, and may not ever, bend forward. That means I cannot do simple tasks like tie my own shoes, and routine stuff like going to bed becomes a chore. My whole body is stiff and rigid and I’m pretty damn uncomfortable, but it could be worse. Recovery is long and any twenty year old just wants to look forward to going away and music festivals and staying out all night- but I have a long road ahead of me. You know what they say; third time lucky. Without a doubt, this experience has molded me in becoming a better person with a completely different out-look on life; it’s for living. Besides, my body has just under ten thousand euro worth of titanium and steel in it- jealous? For now, I am focusing on recovering and finishing my degree as a journalist, and becoming best friends with Anna Wintour.

My spine after my third operation, with more than 8 thousand euro of equipment in my back

My spine after my third operation,  with more than 8 thousand euro worth  of equipment in my back

 

Scoliosis can be easily detected with routine checks of your spine by your physician. It is important to maintain correct posture when sitting and walking; especially in children. A sign to detect early scoliosis in children is to see how their clothes fall on their bodies: a simple but effective way of checking. This year, Ireland is hosting its second annual World Scoliosis Day on June 28th to raise awareness of the debilitating condition.

Love, Cultured Cuppa

#EnjoyYourCity