Sixth Post: Sorry!

Hi there,

I am so, so sorry about the lack of comments. I've been back at school, and it has been absolutely hectic. I'm doing 3 advanced highers, I'm head girl and

I just always, always have something to do!

But I'm hoping to dedicate more time to the blog now the link has been included with my article I wrote for "Backbone" magazine.

Here is a link to the Scoliosis Association UK website:

http://www.sauk.org.uk/

Here is an extract from the website:

"The Scoliosis Association (UK) was founded in 1981. It is the

only independent support group for scoliosis in the UK. There is no cure for scoliosis, only corrective treatment for the twisting and curving spine. SAUK aims to provide information about scoliosis, eliminate fear and stigma, and offer contacts for shared experiences, because:

• adolescents need support and reassurance
• parents need information and contact with others who have been through the same situation
• older people need help with pain
• the public need to be aware of the importance of early detection of scoliosis in children"

If you live in the UK, it's a really good idea to get involved with the association. They have a magazine that goes out called Backbone, which is filled with interesting articles and stories, and helps bring together people who have scoliosis.

You can also raise money for them, as I did last year:

Sophie’s ice cream sale scoops some scoliosis cash

Oct 24 2008 by Caroline Boxer, Strathearn Herald

WHEN Morrison’s Academy fifth former Sophie Equi, of Perth, sets her mind to a task, she succeeds.

At 14, Sophie was diagnosed with scoliosis. Determined to battle it out, she underwent bout after bout of surgery followed by long and painful recovery periods over two long years. Now back in school, Sophie has set to work with the charities committee to deliver on a promise she gave to raise money for the cause.

Earlier this summer, when Sophie told her story to the Herald, she said she planned to do her bit to give something back to the doctors and nurses who looked after her and to the Scoliosis Association, which supported her throughout her ordeal. So, her campaign got underway last week, with a first event - an ice cream sale during school break.

If the surname didn’t give it away, then the choice of inaugural event surely did, for Sophie’s dad, David, is the man behind Equi’s Ice Cream and the Hamilton ice cream parlour voted Britain’s no. 1 in a survey in The Independent. So, Sophie told us: “I asked Dad if he could donate some ice creams, and he obliged, with 150 tubs.”

Before the sale, the diminutive 16-year-old confessed: “I’m a wee bit nervous; I just don’t want anything to go wrong.” She needn’t have worried: Sophie and her helpers, Katie Souter, Seona Christie, and Rebecca Dickie, coped admirably with the crowds as the tubs flew out the doors. Strawberry just about pipped double vanilla in the popularity stakes, and exclamations of “Awesome!” were frequently heard above the melee. Aficionados keen to demonstrate their sweet savvy, smugly informed the others: “Wait ‘til you try Sophie's Crunch” – in fact, a scrumptious concoction named after the woman of the hour.

Sophie still goes for checkups every three months but for now is happy “just to feel like a normal teenager.” That ‘normal teenager’ is happy to report that the sale should bag £200 for the association, boosted by another £50, the proceeds garnered from the personal account of her struggle that the enterprising Sophie earlier syndicated to the press."

I was thinking of having some sort of checklist for people to take to hospital if they're going to go under surgery.

Any other ideas?

Let me know at sofz_equi@hotmail.co.uk

Take care!

Sophie

x

Fifth Post : Another Scoliosis Story

"I have scoliosis. And it's affecting me not only physically but emotionally and socially. I stopped studying because of this. And I rarely go outside because I'm ashamed of how I look.

When I was 6 years old, I noticed that my shoulders were uneven and I told it to my mother but she just ignored it, and when I was 10 years old, I noticed my posture, it became severe... but we didn't have enough money to afford the medical bills .And when I was 12 years old, it became more severe. Until now, I still didn't have my brace because of our financial problem...

I'm so sad because of what I am experiencing in my life. I'm away from friends too and they already have new friends. People are making fun of me whenever they see me, that's why I exactly knew how you feel."


A big thank you to all of you who have shared their stories with me.
They are heart felt, and at times sad (especially the last one), so if anyone has any words of support, please forward them to me at sofz_equi@hotmail.co.uk.
Please continue to send me your stories at the above email address, and your ideas for the blog- what you want to see.


thanks x

Forth Post : Another Scoliosis Story

"I have scoliosis and wore a back brace for over 5 years.

My first experience with Scoliosis was one night when my mom and grandma asked to look at my back. They had me bend down and decided to have a doctor look at my back, because my Aunt Jennifer had scoliosis. Hers was 60 degress at diagnosis. She had a full spinal fusion from tailbone to pelvis. I had an initial x-ray and was diagnosed with 17 and 20 degree curves. We were told to wait and see if it got worse.

Then I was put in a Boston Brace on August 4th of 2003. My curves slowly worsened, reaching up to 38 degrees at which point surgery was discussed. My grandmother's cousin sent us an article about a local PT who was working with a new therapy method used in Spain and Germany.

At a Christmas party that year, my parents met a physical therapist who was excited about the same method of physical therapy. I was then asked to be her test subject in her training in this therapy. While training, I met Dr. Manuel Rigo of Barcelona, Spain. He suggested to us that we switch to the Cheneau brace, a brace used in Spain and Germany. I did, and we saw a slight decrease in my curves and the halting of curve progression. The physical therapy was empowering and really helped me. And, I firmly believe that the Cheneau brace saved me from surgery. Last summer I was taken off the full time wearing of my brace. Then in December I stopped wearing one at all.

That day was without a doubt the greatest in a long time."

Third Post : A scoliosis story

Here is a story that was sent to me by a young girl. If anyone wants to send me their stories, anonymous or not, please feel free to drop me a line at sofz_equi@hotmail.co.uk

"So I was diagnosed with Scoliosis in October 2007.

It is an Idiopathic Scoliosis, meaning there is no known etiology (no known cause).

My Scoliosis is in an S shape, so there are two different curves.

I was 11 years old at the time, in fifth grade.

It was a mild case, but enough so that I had to wear a back brace every night.

I would have to wear this brace until I stopped growing, or until I had a surgery to put rods in my back.

I would have really bad back pains during school, so my teacher knew of my Scoliosis.

I didn’t want anyone to know that I had it at the time, so I hadn’t told my class yet.

But one day my teacher was talking and it almost slipped out.

So she looked at me and asked if she could tell the class.

It’s not like I could say no…

So my teacher told everyone.

Some people apologized, some didn’t say anything.

One person left a card on my desk saying that she was sorry.

I appreciated everyone’s support.

On a break in our class time, a kid came up to me (Let’s call him Larry).

He said, “So, what exactly does your condition do?”

Now, when they had told me what I had, my mom had told me a little bit about its history.

She said that a long time ago when they didn’t know what the condition was,

People saw a man that suffered from it as a freak. They called him ‘Elephant Boy’,

From the way his curve forced him to hunch over.

So I told Larry, “Just look up ‘Elephant Boy.’ It’s a person that suffered from it a long time ago.”

Well, Larry wasn’t exactly my best friend forever. He was mean to my best friend.

So at Recess (keep in mind, this is fifth grade), he was mean to my friend.

So when I confronted him, and we fought a bit, he got this look on his face.

I said, “What?”

“You won’t like it…”

“Larry, I don’t like ANYTHING you say.” I said, still angry at him.

“Okay… Elephant Girl!” I grin appeared on his face.

I stormed away shouting at him.

But when I got to the other side of the playground, I broke down into tears.

People comforted me, but what he said stuck with me.

When I got in from Recess, I didn’t say anything.

When I got home, I didn’t say anything either, until later.

My mom was furious.

The next day, my mom came into school.

Everyone looked up silently, all knowing why she was there. Word had spread.

My best friend, who I had defended in my previous fight, seemed forgiving of Larry.

She came up to me and said,”Larry has a note for me to give you.”

I said, “Great, can you take it to the recycling for me?”

So he just kept it.

My teacher was furious at Larry. And so was the Principal. Larry had to sit in a chair for 20 minutes in the

front office until the Principal decided what to do with him. He finally pulled him into his personal office,

with me there. I explained what happened. But then Larry pulled out the note he had tried to give me.

He had written an apology. The Principal had him read it to me.

I said thankyou, but didn’t say that I forgave him. The Principal then said how he was such a good

Kid for writing an apology and he got completely off the hook.

Later, someone told me that Larry had been bragging to a group of kids how all he had to do was

apologize and he was off the hook.

I just ignored him the rest of the year.

We go to different Middle Schools, but one day at my best friends house (the same one

From elementary) Larry wouldn’t stop calling for her. He was a bit of a stalker at the time.

I answered the phone and told him to stop calling.

He recognized me and said, “Elephant Girl says what!” really fast

so when I would say ‘what’ I would be the Elephant Girl. Ha ha, Larry.

Instead, I hung up and locked myself in the bathroom for a couple of minutes.

This year, when my bff (SAME FRIEND) got in a fight with another girl, I went to the bat for

Her. The girl (let’s call her Nicky) called me Elephant Girl. (By the way this is over email)

I called up my bff in tears. She yelled at Nicky (over email), but not before

I wrote a Journal on my Tagged page telling everyone what happened.

I had had enough and wanted to expose both Nicky and Larry.

Nicky emailed me after reading it and said,”Sorry, Larry just told me to call you thatJ.”

But said in the same email how she stuck by him because he was her best guy friend.

By now my curves were about 36 and 26 degrees.

That was the last measurement I had.

But my mom, being a Medical Transcriptionist, said she could notice my curves becoming

very noticeable. But I have to wait until my next doctor’s appointment to find out how

Much my curves have grown.

My mom says that I will only have to wear my brace for another year, because I will probably be

Don’t growing. But at the end of that year, we will probably discuss surgery, if it has gotten really bad.

I am on my second brace, currently.

And that brings us up to date!"

If anyone has any words of support, please leave a comment. Thanks.

Second Post : What is Scoliosis?

Scoliosis is curvature of the spine. It can occur at any age but it is particularly common for development to begin in teenagers, especially girls.

Often, by the time a teenager has noticed any abnormalities, such as uneven hips or shoulder blades, their spine has curved to the extent that a back brace of physiotherapy (which has not been proven to work -nor can chiropractors do anything- back braces can help however) is not an option and the only way they can fix their condition is with major surgery.

The extent of any curve is measured using a Cobb angle, which can be seen marked on my x-rays below, which determines the severity of the condition. Forty degrees is typically the "cut-off" angle after which surgery is recommended.

In around 80% of cases, the causes are unknown. Left untreated, scoliosis can cause damage to the chest, pelvis, heart and lungs.

Famous suffers include Gillian McKeith, the presenter of You Are What You Eat, Princess Eugenie (who had surgery to correct her condition), the late Kurt Cobain and Sarah Michelle Gellar.

See more here : http://www.scoliosis-world.com/famous_people_with_scoliosis.htm

above: famous people with Scoliosis

Read more about scoliosis here : http://en.wikipedia.org/wiki/Scoliosis but BE WARY of the information!
If any one has any questions, please feel free to leave me a comment or drop me a line at sofz_equi@hotmail.co.uk

Byee :D xxxxxxxx

First Post : Who I am

Hi there and welcome to "S for Scoliosis", aptly named so because "S" represents the curvature of a spine affected by double curve scoliosis, it is the first letter of scoliosis, and my name is Sophie!

The reasons I have set up this blog:

*I was a scoliosis sufferer until February 2008 when I underwent major surgery to correct my double curve

*I have been trying to raise awareness of the issue, which I feel is important because it may allow more sufferers to recognise the condition when it is in it's early stages.

*I want to try and make a positive difference in the lives of those who feel their condition brings them down

*I want to hear various opinions on scoliosis and all your stories, because it is such a common but often misunderstood condition

*I want to provide an online community for those who are either suffering from the condition, those who have had treatment or for the friends and family of scoliosis sufferers, or just anyone who is interested about scoliosis.

A little about me...

My name is Sophie, I'm 17 years old and live in Scotland.


I suffered from Adolescent Idiopathic Scoliosis (which means I had scoliosis as an adolescent, but they don't know what caused it) and had a double curve.







The pictures pretty much say it all.

Before

After

So now I want to know...

What are your ideas for the blog? What do you want to see? What are your stories? Leave a comment, or drop me a line at sofz_equi@hotmail.co.uk.

Bye for now!

xxxx