Osteogenesis imperfecta

The phrase osteogenesis imperfecta may look like a mouthful, but there's a chance you may be familiar with this condition under a different name.

Osteogenesis imperfecta (OI) is commonly known as brittle bone disease: a genetic condition that prevents adequate production of collagen, resulting in under-developed bones that are naturally more susceptible to fractures.

According to the Osteogenesis Imperfecta Foundation, osteoporosis is an almost universal consequence of this (learn about osteoporosis here). Sadly, it's not the only possible consequence that people with OI sometimes have to deal with.

 

The relationship between osteogenesis imperfecta and scoliosis

While the likelihood of being diagnosed with both osteogenesis imperfecta and scoliosis is extremely rare (0.1 in a million), it's far from an impossibility. In fact, many within the medical community theorise that there is a relationship between the two conditions.

It's believed by some medical professionals that OI can actively contribute to the development of scoliosis. As such, the chances of developing scoliosis are, in theory, likely to increase marginally if you already have OI.

 

Scientific studies on OI and scoliosis

Findings presented by James J. McCarthy at the American Academy of Orthopaedic Surgeons' 74th Annual Meeting in 2007 appeared to confirm this theory. The study focused on childhood OI in particular, and was carried out retroactively.

Of the 288 osteogenesis imperfecta patients studied, 83 were later diagnosed with scoliosis. This represented a 28.8% incidence of scoliosis in existing OI sufferers. What's more, those who underwent corrective surgery for their scoliosis had a high rate of complication.

Meanwhile, a further study published in the Journal of the American Academy of Orthopaedic Surgeons in 2017 noted that, while scoliosis is rarely discovered in OI patients under six years old, it can progress rapidly thereafter.

The journal went on to note that the most common type of scoliosis curve found in OI sufferers was a single thoracic curve (present in 97% of scoliosis patients with type I OI). Meanwhile, 58% of scoliosis patients with type III OI had curves in the thoracic region.

Healthy bone vs brittle bone

Treating scoliosis patients with osteogenesis imperfecta

Due to the fragility of OI patients' bones, scoliosis treatment can be tricky. Manoeuvrability may be limited, and stress placed on the bones could prove to be dangerous.

What's more, younger patients may also exhibit confidence issues and lack of trust in treatment providers, particularly if they have suffered multiple bone fractures in the past.

Here at the Scoliosis SOS Clinic, our aim is to provide safe and effective non-surgical treatment for people with scoliosis. For those who also suffer from osteogenesis imperfecta, our ScolioGold programme is a fantastic way of treating the symptoms of scoliosis without aggravating the symptoms of OI.

From muscular imbalance and trunk rotation to breathing and posture improvement, our specialist treatment courses (led by trained professionals) can be truly life-changing for those who have both OI and scoliosis. The treatment can even be modified to involve fun, interactive exercises for younger patients.

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Scoliosis Explained Infographic

The World Wide Web makes it relatively easy to find factual information about scoliosis, its symptoms, and the available treatment options. But fictional tales about people with scoliosis are a little harder to find.

Today (11 June) is Empathy Day, and with the accompanying #ReadForEmpathy campaign, the organisers are hoping to highlight the power of stories to help us understand each other's lived experiences. In that spirit, then, here's our all-ages guide to stories about scoliosis and what it's like to live with a curved spine:

 

Scoliosis Books for Children

Ideal for younger readers, these books can be a great aid for parents who are looking to help their young children understand scoliosis and the effects it can have on one's body. Better still, they also help to highlight the fact that a scoliosis diagnosis isn’t the end of the world, and that courage and perseverance can help to overcome even the biggest obstacles.

Being Grace Scoliosis Story

Being Grace by June Hyjek

Ideal for educating young children about the ins and outs of scoliosis, Being Grace follows the story of a Grace, a young giraffe who has a curved neck.

As in the Christmas story of Rudolph the red-nosed reindeer, Grace the Giraffe is singled out and ridiculed for being different. Despite this, Grace's crooked neck allows her to do things the other giraffes can't.

Grace ultimately learns to be happy in her own skin, accept her differences, and appreciate the way they make her unique. The author June Hyjek has scoliosis herself, adding authenticity to the story and its message.

View on Goodreads >>

 

The Bravest Thing

The Bravest Thing by Donna Jo Napoli

The Bravest Thing centres around pet-loving 10-year-old Laurel and her pet rabbit. When the rabbit has babies, the rabbit's unwillingness to feed her offspring leaves Laurel (who has scoliosis) to take the lead and keep them healthy herself.

The book focuses on optimism in the face of adversity, providing a good introduction to the effects of scoliosis for children.

View on Goodreads >>

 

S on My Back scoliosis book

There's an S on My Back by Mary Mahony

Mary Mahony’s 1999 book There's an S on My Back is a great way to educate pre-adolescent readers about the implications of scoliosis while also reinforcing hope, instilling courage, and dispelling anxiety.

Written as a first-person narrative from the perspective of lead character Maisey MacGuire, There's an S... provides children with an enlightening insight into scoliosis, from diagnosis to treatment, including brace fitting and the social situations around it.

View on Goodreads >>

 

Scoliosis Books for Older Kids & Teens

For older children who have just entered their teenage years (or soon will), the following books provide a more mature analysis of scoliosis while still effectively maintaining engagement in younger readers. Centred around early adolescent characters, these books are a great way to improve a child's knowledge of scoliosis while still capturing their imagination.

Abby's Twin

Abby's Twin by Ann M. Martin

Part of the Baby-Sitters Club series, Abby's Twin tells the story of twin sisters Abby and Anna. Anna is diagnosed with scoliosis after a routine school screening, and the twins are left to come to grips with the revelation in their own way, with Abby's excessive attempts to comfort her sister ultimately leading to a falling out.

Bridging the gap between children's literature and teen reading, Abby's Twin is a good introduction to scoliosis for young teens and pre-adolescents, highlighting the importance of communication and family.

View on Goodreads >>

 

Braced scoliosis book

Braced by Alyson Gerber

Braced is the debut novel from Alyson Gerber (who has scoliosis herself). It tells the tale of Rachel Brooks, a 7th-grade student with a place on the school soccer team, a crush on a boy named Tate, and a great year ahead of her...until she's told that she has to wear a scoliosis brace for 23 hours a day.

Told from an authentic and honest perspective, this heartfelt story recounts the trials and tribulations of a maturing teen coping with scoliosis, with great underlying messages of compassion and triumph over adversity.

Published in 2017, Braced came as a welcome modern addition to the realm of scoliosis fiction, and it has been repeatedly praised online as a great read for teens and young adults alike.

View on Goodreads >>

 

Dear Isaac Newton Book

Dear Isaac Newton, You're Ruining My Life by Rachel Hruza

Another recent publication to add to the growing list of scoliosis novels, Dear Isaac Newton... was originally published in early 2018 and follows the story of Truth Trendon, a 12-year-old with scoliosis.

The main protagonist in this scoliosis story aims to keep her scoliosis a secret from her classmates. Of course, the lies soon start to snowball, and disaster looms...

Touching and quick-witted, this book is full of adolescent angst and important life lessons, with the scoliosis theme prevalent throughout. Another great read for early teens.

View on Goodreads >>

 

Young Adult Books About Scoliosis

These books focus on a variety of themes and plotlines, and while they are predominantly aimed at young adults, they are just as suitable for those that fall outside of that category, providing a good literary experience for adults too - particularly those with an interest in scoliosis.

Deenie

Deenie by Judy Blume

Perhaps the most famous book on this list, Deenie is considered somewhat of a cult classic, achieving both critical acclaim and controversy.

First published back in 1973, Deenie has seen its fair share of controversy, primarily due to its sexual references. As a result, Deenie has been banned in countless schools, even landing on the American Library Association's list of the '100 Most Frequently-Challenged Books' in the 1990s.

However, this was nothing new for author Judy Blume, who has had numerous other books on the same list over the years. And none of this has impacted the book's popularity; Deenie is still held in high regard and frequently cited as a 'coming of age' classic, and it's a great scoliosis story to boot.

View on Goodreads >>

 

Mannequin Girl

Mannequin Girl by Ellen Litman

The second novel from Ellen Litman, Mannequin Girl is another coming-of-age story, but this one is set in 1980s Moscow.

The action - which takes place within a boarding school that's specifically for children with scoliosis - centres around lead character Kat, who enters first grade at the age of six as the book begins. We then see Kat's experiences over the eight years that follow.

Themes of identity, independence and rebellion emerge; Litman herself grew up in Moscow, allowing her to draw upon her real-life experiences for a narrative that's authentic, engaging and heartfelt despite being written in third person.

View on Goodreads >>

 

Heaven Sent book

Heaven Sent by S.J. Morgan

The most recent entry on this list, Heaven Sent is the debut novel of British ex-pat S.J. Morgan. A trained occupational therapist, Morgan has real knowledge of scoliosis, and she uses this knowledge to great effect throughout Heaven Sent.

Another coming-of-age novel, relationships are the key theme here, with particular focus on friendship, family and love. The well-developed characters and thought-provoking narrative make Heaven Sent a solid read that's even more appealing to those with firsthand experience of scoliosis.

View on Goodreads >>

Scoliosis SOS is a specialist clinic in London, UK for people with scoliosis and other spinal conditions. Learn more about us here, and if you'd like to arrange a consultation, please don't hesitate to get in touch.

X-rays of people with scoliosis

As you may already be aware, June is Scoliosis Awareness Month (culminating in International Scoliosis Awareness Day on Saturday 29 June).

If you're looking to help fly the scoliosis flag this month, there are lots of ways to help raise awareness - here are just a few ideas to get your cogs turning:

 

1. Social Media

It's no secret that social media is an incredibly powerful tool. This applies just as much to your personal social media accounts as it does to those owned by businesses, brands and celebrities.

If you want to get the word out to your friends, followers and family members, a simple Facebook update, tweet or Instagram post can go a surprisingly long way. Including a 'please share' request within your post will encourage people to spread the word to their own social spheres.

 

2. Flyers

If you're not big on social media, offline methods can work too. Printed flyers can be extremely impactful when it comes to informing and educating your community.

Producing flyers can be surprisingly economical, too - particularly if you shop around. Once you've got a stack of flyers ready, distribution can be as simple as standing in the centre of town and handing them out. You may also be able to place your flyers in local cafés, shops and other locations (but be sure to ask permission first).

 

3. Viral Challenges

Remember the ALS Ice Bucket Challenge? It was a sensation back in 2014: countless people, including a number of politicians and celebrities, shared videos of themselves getting soaked in order to raise awareness and funds for motor neurone disease charities across the globe.

We're not suggesting that you subject yourself to a bucket of ice-cold water, but you could definitely look to the viral success of the Ice Bucket Challenge for inspiration. Why not think of your own unique challenge, give it a catchy name, and get filming? Then post the video online, challenge three of your friends, and see where it leads!

 

4. Posters

A memorable, well-designed poster can be a great way to get a point across. If you're not much of a designer yourself, it's well worth paying a professional to put something together for you - posters work best when they're really eye-catching!

Strategic placement is important to make sure your poster is seen. Ask you family and friends to help you get your posters in densely-populated, high-footfall areas like busy streets, community centres, and places of business.

 

5. Speeches

If you're a confident public speaker, Scoliosis Awareness Month is a great time to put that talent to use. Giving a talk at - for example - a local school is a superb way to get the message out to people who might not otherwise have heard it. This is especially true if you yourself have scoliosis and can comment on what it's like to live with a curved spine.

If appropriate, you could even follow up your speech with a collection bucket to make the most of your platform and raise funds for a scoliosis charity of your choosing.

 

6. Merchandise

Pens, badges, hats, T-shirts...branded merchandise is a great way to promote a cause, and if you can afford it, you may want to consider using customised merch to raise awareness of scoliosis.

You could give your merchandise away for free as a promotional exercise, or sell it to raise funds for a worthy charity - either way, don't be afraid to get creative!

 

7. School / Work

Whether you're in school, university, or the world of work, getting your classmates / colleagues involved in your quest to boost scoliosis awareness will help you to cover a lot more ground.

Here's the golden rule: the simpler the task, the more likely people are to participate. Try to keep your requests nice and straightforward - for instance, you could encourage everyone to wear green for scoliosis, or change their email signature in recognition of Scoliosis Awareness Month. If you're feeling ambitious, you could even organise a bake sale and donate the proceeds to a scoliosis charity.

 

8. Local News

Even in this ultra-connected era, lots of people still read the local paper - or indeed the local paper's website.

Journalists are always looking for ideas, and they love local interest stories that focus on real people and the challenges they face. If you have struggled with scoliosis and achieved something special, now is the perfect time to celebrate it. In a world that can sometimes feel like it's bursting with bad news, a slice of positivity should be an easy sell that your local journos welcome with open arms.

More on Scoliosis Awareness Month   About Scoliosis SOS

The history of scoliosis therapy can be traced all the way back to ancient Greece.

More specifically, scoliosis treatment has its roots in the 5th century BC and one man in particular: Greek physician Hippocrates (c. 460 – 370 BC).

Statue of Hippocrates

Who was Hippocrates?

The mid-to-late 5th century BC was a turbulent time for the Hellenic people.

From 431 to 404 BC, the country was entrenched in a titanic war between the Delian League of Athens and the Peloponnesian League of Sparta. Meanwhile, Athens was also suffering from a devastating plague, which wreaked havoc in the city periodically between 430 and 426 BC.

In short, it was a dark time for Greece. But this was also the period that gave us Hippocrates, often referred to as the 'father of medicine'.

Born on the island of Kos around 460 BC, Hippocrates was the son of a physician and is believed to have learned the trade from his father. Among his long list of medical achievements, Hippocrates is heralded as the first person to theorise that diseases and ailments were caused by environmental factors and not the result of superstition or an act of the gods.

He's also the namesake of the 'Hippocratic Oath': the pledge taken by doctors declaring their moral and ethical obligations to their patients as medical practitioners.

Hippocrates and Scoliosis

Separating medicine from religion would probably have been enough on its own to secure Hippocrates's place in history, but his achievements go far beyond that. Notably, he was also a key figure in the history of spinal treatment, and he is believed to have been the first physician to focus on the anatomy and pathology of the human spine.

Through his revolutionary study of the spinal structure and vertebrae, Hippocrates's work led to the pioneering identification of many spine-related diseases – including scoliosis.

Hippocrates is commonly credited as the person who coined the term 'scoliosis' and the first to try treating this condition.

Scoliosis

Hippocratic Scoliosis Treatment

From his unprecedented study of orthopaedics, Hippocrates created three pieces of equipment to treat spinal ailments: namely the Hippocratic ladder, the Hippocratic board, and the Hippocratic bench.

Hippocratic Ladder

Intended to reduce spinal curvatures, the Hippocratic ladder treatment required the patient to be elevated and tied to the ladder upright or head down (depending on the where the curvature lay). The patient would then be shaken on the ladder, with the gravitational pull theoretically straightening the spine.

Hippocratic Board

Similar to the ladder, treatment via the Hippocratic board involved the patient being tied to the board; however, this time, the patient was required to be prone, lying face down and flat. The physician would then apply pressure to the affected area of the spine using a hand, foot, or even the entire weight of the body.

Hippocratic Bench

Also known as the Hippocratic scamnum, the bench technique saw the patient lie face down on a bench similar to the board technique above. A smaller wooden board was then inserted into a pre-made hole in the wall, leaving the plank protruding out above the patient's back. An assistant would then apply pressure on the end of the plank while the physician manoeuvred the board along the body.

Like many ancient treatments, these techniques naturally seem archaic, even barbaric by today's standards. Nevertheless, these apparatuses – based on the principles of axial traction and three-point correction – were hugely innovative at the time, and they had a profound influence on the direction of spinal treatment to follow.

Luckily, medical science has come a long way since the days of Hippocrates, and there are now a variety of comfortable and safe non-surgical scoliosis treatments available. At Scoliosis SOS, our team of friendly, skilled therapists offer patients specialised scoliosis treatment that's specifically designed to enhance your quality of life.

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