Scoliosis - Raising Awareness

The Scoliosis Association (UK) is the only independent support group for scoliosis in the UK. It was set up in 1981 to help people affected by scoliosis.

What is Scoliosis?

Scoliosis is a sideways curvature of the spine, in which the spinal column can also twist, pulling the ribcage out of position. Although many people have not heard of the condition it is surprisingly common, with three to four children per 1000 needing specialist supervision.

It can affect a person's appearance because when the spine bends to the side the vertebrae (the individual bones that make up the spine) become twisted and pull the ribs round with them, which sometimes forms a characteristic lump on the back and can cause the shoulder blade to stick out. The spine can bend towards either side of the body at any place in the chest area (thoracic scoliosis), in the lower part of the back (lumbar), or above and below these areas (thoracolumbar). It can even bend twice, causing an S-shaped curve. When the curve is S-shaped (a double curvature) it is often not noticeable and the person can appear quite straight because the two curves counteract each other. If the curve is lower down in the spine, the ribs will not be affected but one hip might be higher than the other.

The causes of scoliosis are many, and although we well understand the consequences, the origins of this condition remain complex and obscure. Most cases of scoliosis should be monitored by a scoliosis specialist (it is crucial that people with the disorder see a specialist at one of the 30 centres of excellence across the UK).

There is contradictory evidence as to whether early discovery and treatment of a curve improves the long-term outcome, but we know that if curves are discovered late, when they are already severe, the results of treatment can be compromised. Therefore it is important that early referral to a scoliosis specialist is achieved. Treatment in a scoliosis centre will usually prevent unsatisfactory long-term results

SAUK - Provide advice, support and information to people affected by scoliosis, and their families
Raise awareness among health professionals and the general public
They achieve these aims by:

Running a helpline (0208 960 1166) open Monday -Friday 9.30 - 5.30
Organising campaigns to help increase awareness of scoliosis in the general public and among health professionals
Producing publications to help inform those with scoliosis
Holding regional meetings at which specialists provide advice on scoliosis
Running a membership scheme that helps people with scoliosis to keep in touch with one another, access support in their local area and keep them up-to-date with treatment developments.

My personal story

My name is Amy
I am 28 years old

I developed Scoliosis when i was 13.
I noticed that one of my hips was sticking out more than the other.
Too look at myself in the mirror i looked 'Wonky' and instead of confiding in my parents i used to tie a belt around my waist and pull myself to the side that had the curve.
Of course this wouldn't have worked but as a 13 year old girl getting used to my body it seemed so logical.

After numerous painful attempts over a few months i resigned to the fact that my body just didn't look like anybody else and although i was a confident outgoing child, i was extremely uncomfortable with my body image and i just hid it all away.
Being surrounded by images of what the female form should look like did nothing to aid me in coming clean about what i saw as something to be ashamed of. I saw my body as something freakish and i hated it. I thought that if i were to tell or show anybody that i would be ridiculed and laughed at.

It wasn't until i was in my early 20's, armed with a pc and the internet, that i decided to use google to see if i could find any answers.
So far i had successfully hidden my double curvature (by this time my spine had started forming into an S shape with the larger curve at the bottom leaning to the left hand side) from everyone but as my aches and pains were starting to become more pronounced i figured it was a good a time as any to do some searching.

I think it took me all of 10 minutes of googling to realise that i was not alone and i cannot even describe that feeling. for almost 10 years i had felt such disgust at my body and what it was doing. The idea that this was an actual condition had never entered my head.

I decided i would need to pay a visit to my GP.
I booked an appointment and took along an armful of information that i had jotted down.
I remember walking into the room and literally bursting into tears as i told the doctor that i thought i had Scoliosis.
He told me to pull my shirt up from the back and bend forward (This test is performed in most schools in America as a standard test for Scoliosis)
Sure enough i had a 'hump' on one side and my hips were not symmetrical.
I think i was crying from all of the issues that i had built up within and now suddenly i had stripped it back and shown somebody and they knew what it was!
However i was told that yes i did have Scoliosis but that nothing could be done and i shoud just get on with it.

I left the doctors office feeling slightly pleased that finally i was able to tell somebody and i had an actual name for what had happened / is happening to my body but the majority of what i felt was disappointment.
Surely my spine was something quite important?

For the next few years i carried on with my life - i still researched here and there but i had took what the doctor had said as standard. It wasnt until i stumbled upon SAUK that i began to realise that i may have been fobbed off.

I went back to my gp after deciding i wanted to get a referral to a spinal specialist. by now i had found that there were many people who had been in my shoes, had visited there gp but been sent away, gone back to there gp, got a referral and finally made progress on working on their Scoliosis.

My first appointment with the 'Specialist' was in 2009 when i was 26. I was asked a bundle of questions and sent for xrays.
My second appointment was for an MRI. One of the most uncomfortable experiences in my life. especially as the results would not be in for a few months.
My third appointment was in early 2010 when i was 27. The results for my MRI had come back Clear and i was able to see my xrays. As soon as i laid my eyes on them i burst into tears. I knew my body was curved but until then i had no idea at to what extent.
The specialist allowed me to take a picture of the xrays from the computer screen and then told me i would not need to be seen again.
I was not given any further information and once again felt dissapointed at the lack of interest that this condition seemed to have.

I began to use a forum called 'Scoliosis Support'
It was here that i began to speak with people on a regular basis and find out information regarding specialists and surgery. Although the doctor i had seen had been an orhopeadic it seemed that he was not an actual specialist in Scoliosis.

In 2011, aged 28, i decided to visit my gp once more.
By this time my aches and pains have tripled and i am able to see visible changes in my spinal twist.
The doctor advised that it would not get any worse but i can see it happening and from what i see on the forums, i am not alone.
I went to my doctor armed with 2 names. these names were of the specialists, and i was determined.
It was a gp i had never spoken to before and i did become rather frustrated when as i was telling my tale of woe he was giving me a look of pity but with a smile. He knew what name s i was going to give to him and he tried his hardest to get me not to pursue a referral. He quoted back the letters that had been sent to him by the orthopeadic i had seen for the xrays and MRI. I was shocked to hear that I had apparantly declined surgery as an option and had basically wasted time and resources.
However i didnt back down and got my referral.

This appointment was also the first time i found out what degree my curves were. At 28 years old!

To put it into perspective - curves around 10 to 015degrees should be monitored but would more than likely not cause too much discomfort (this is not true in every case - the smallest curve can cause maximum pain)

A curve of around 20 - 40 would more than likely need some kind of brace and monitoring to ensure the angles do not get any worse

A curve of 40 to 50 degrees would more than likely need surgery

My curves are currently approx 60 (top) degrees and 70 (Bottom) degrees.

This is why i am supporting SAUK and feel the need for more awareness. I would hate to think of anybody going through what i did as it is hard enough battling with body image when you are growing up, but the fact that the medical professionals that i and many others from the forums have come across do jot even take this condition seriously is a major worry.

Scoliosis is something that will not be going away.
The majority of times the reasons for the curves is completely unknown.
3 out of every 100 people will develop some degree of Scoliosis.

Surely it is time to stop hiding this condition away and begin raising awareness to ensure nobody has to go through Scoliosis alone.