Providing support and promoting respect for everyone with a visible difference

Support line: 0300 012 0275Donate

Scoliosis

Information about scoliosis, as well as guidance about what support is available from Changing Faces and other organisations.

What is scoliosis?

Scoliosis is a curvature of the spine which can affect anyone of any age, although it most often starts in children aged 10 to 15. In scoliosis, the spine can curve left or right. Sometimes there are two curves and the spine may look like an S shape from behind. This is called a “double curvature”.

Scoliosis can improve with or without treatment and is rarely a sign of anything serious. For many people with scoliosis, the condition does not usually cause significant pain or interfere with daily life, although in some cases discomfort may need to be managed with pain relief. Various options are available if your doctor thinks treatment is necessary, including back braces and surgery.

In most cases, the cause of scoliosis is unknown. This is known as “idiopathic” scoliosis. Sometimes, children are born with scoliosis if the bones of the spine have not formed properly in the womb. Scoliosis can also be caused by a nerve or muscle condition such as cerebral palsy, muscular dystrophy or neurofibromatosis.

In many cases, scoliosis is not visible to others. However, for some, the curve of the spine may be noticeable or cause the rib cage or hip to stick out on one side or the shoulders to be uneven. You may lean more to one side. This can make some people feel self-conscious about their appearance. Some children with scoliosis wear a back brace which can also affect confidence and self-esteem.

On this page, we explore the different types of scoliosis, what causes scoliosis and the treatments available. We also talk about how we and other organisations can support you if you feel self-conscious about the impacts of scoliosis on your appearance.

Changing rooms were my worst nightmare back then. I was acutely self-conscious and knew the other girls in PE were staring and whispering when I wasn’t looking.

Helen, who has scoliosis

Types of scoliosis

There are lots of different types of scoliosis, divided into two categories:

  • Structural
  • Non-structural

Structural

Structural scoliosis causes rotation of the vertebrae (the bones that make up the spine) as well as curvature of the spine. Most types of scoliosis fall into this category, including the most common form, idiopathic scoliosis.

Congenital scoliosis

“Congenital” means “present from birth”. In some cases, scoliosis develops while the foetus is in the womb. However, this is very rare, affecting only one in 10,000 people.

Degenerative scoliosis

This tends to occur later in life as the joints of the spine deteriorate with age.

Idiopathic scoliosis

By far the most common type of scoliosis, affecting eight out of 10 people with scoliosis. “Idiopathic” means “without a known cause”. It is not linked to bad posture, exercise or diet.

Neuromuscular/myopathic scoliosis

This affects people who cannot walk properly due to a condition such as cerebral palsy or muscular dystrophy.

Non-structural

Non-structural scoliosis causes curvature of the spine but it does not cause the vertebrae to rotate. Causes include:

  • Difference in leg length: This can cause the spine to curve.
  • Inflammation: If part of the body next to the spine becomes inflamed, this can put pressure on the spine, causing it to curve.
  • Muscle spasms: If back muscles spasm, the spine can be pushed to one side or the other, causing a curve.

What causes scoliosis?

In most cases, the cause is not known (“idiopathic scoliosis”). In some cases, there is a known cause. These can include:

  • A difference in leg length.
  • A neuromuscular condition such as cerebral palsy, muscular dystrophy or neurofibromatosis.
  • Bones not forming properly in the womb.
  • Deterioration of the vertebrae with age.
  • Inflammation of a body part near the spine.
  • Marfan syndrome, a connective tissue disorder, which can push the spine to one side.
  • Muscle spasms which can push the spine, causing a curve.
  • Rett syndrome, a genetic disorder usually affecting people assigned female at birth, which causes severe physical and mental impairments.

Is scoliosis genetic?

In some cases, scoliosis may be genetic. It sometimes runs in families. Although the genetics is not well understood, the US National Institute of Health says that researchers suspect that many genes are involved in idiopathic scoliosis.

It can also be a feature of a genetic condition, such as Rett syndrome.

How is scoliosis diagnosed?

If you think you or your child has scoliosis, you should see your GP. Your doctor will review your medical history and ask you some questions about how the condition has developed. They will also carry out a physical exam. They may also perform some neurological tests to check for muscle weakness, numbness and abnormal reflexes.

If they suspect scoliosis, your GP should order an X-ray. This will confirm the diagnosis and provide more information about how pronounced the curve is, helping to inform whether treatment is needed and, if so, what type.

Treatments for scoliosis

In most cases, treatment is unnecessary as scoliosis is generally mild. However, moderate or severe curves may require a back brace or surgery.

Things your doctor will bear in mind include:

  • Bone maturity: Progression is less likely in bones which have stopped growing, while a back brace is more effective during growth.
  • Severity: More pronounced curves are more likely to get worse.
  • Gender: The condition is more likely to progress in girls and people assigned female at birth than boys and those assigned male.

If your doctor decides treatment is necessary, this will usually be:

  • A back brace
  • Surgery

Back brace

In children whose bones are still growing, a back brace is often recommended to stop the curve getting worse as the bones mature. Braces are usually made of plastic and fitted to the body. Modern braces are near-invisible under clothing. They tend to be worn for long hours – between 16 and 24 hours per day – and are not usually restrictive, although they can be removed for sport or physical activities if needs be. Children stop wearing a brace when their bones stop growing.

Surgery

The more severe scoliosis is, the more it tends to progress with time. Sometimes surgery is needed. This can include:

  • Expanding rod: This is used for a growing child. Rods are attached to the spine, designed to adjust in length as the child grows.
  • Spinal fusion: Metal implants (screws, wires and/or hooks) are attached to two or more vertebrae (bones which make up the spine) and then connected to a single rod or to two rods. During the operation a bone graft is placed over the implants. These implants and rods are used to hold the spine in place until it can fuse itself. Over a period of about 12 months, this bone graft fuses (grows together) with the existing bone in your spine and forms a solid column of bone in that area.
  • Vertebral body tethering: Screws are placed along the outer edge of the spinal curve and a cord is threaded through them. When tightened, the spine straightens. As the bones grows, the spine straightens further. This treatment is currently not available in the UK outside of research trials.

Pain management

Back pain is a very common problem and it is even more common for people with scoliosis. Some people with scoliosis don’t have pain or it is not a major issue. However, for others, pain can be severe and affect every part of their lives. There are many reasons why a person’s scoliosis may cause them pain. The curve of the spine can irritate, squash, or stretch the nerves. It can also put a strain on joints, which become worn or inflamed. Joints are the places in the body where two bones meet. Scoliosis can also affect posture, which can lead to the muscles becoming tight or tired, causing pain.

Depending on the type of pain, there are treatments called complementary therapies that might help. These include things like hydrotherapy and massage and are usually done alongside medical treatments. Exercise that strengthens the core muscles (the back and stomach muscles) such as yoga, Pilates and swimming can also help with back pain.

If over-the-counter pain relief doesn’t work, the next step is to visit your doctor. The doctor will usually prescribe pain medication or refer you to a pain clinic. Your doctor could also arrange you for to see a counsellor.

Head and shoulders picture of woman with blonde hair in garden

Helen’s story: “I’ve decided to embrace my differences”

After years of trying to hide her scoliosis, Helen has found the confidence to own her condition and accept herself.

Read story now

Scoliosis and my appearance

If scoliosis affects your appearance – causing a noticeable curve of the spine or pushing the ribs, shoulder or hip to one side – you may feel self-conscious about the way you look. If you’re the parent or carer of a child with scoliosis, you may be concerned that they are struggling because of the impact of a back brace on their appearance.

People with a visible difference can be more aware of people looking or staring at them. You may even experience people making comments or asking questions about your appearance.

After years of trying to hide my differences and pretend I was “normal”, I’ve found the confidence to own my condition and accept the way I am … I wish I could say to my younger self that how you look really doesn’t matter. True beauty comes from inside a person, so keep on being uniquely you and everything else will fall into place.

Helen, who has scoliosis

What scoliosis support can we offer?

At Changing Faces, we are here to offer support if you are struggling with the impacts of scoliosis on your appearance.

We provide confidential, one-to-one counselling and wellbeing support to adults and young people experiencing social, emotional and psychological difficulties as the result of a visible difference. Over a series of sessions, our wellbeing practitioners will provide a space where you can talk about your thoughts, feelings and experiences. Have a look at our dedicated page to learn more.

Our self-help guides are designed to help you manage the impacts of a visible difference on different aspects of life, from mental health and confidence to work, school and social life. We have guides to help you manage other people’s reactions and deal with bullying and harassment as well as resources especially for families and young people.

We offer a number of other services for people with scoliosis:

If you’d like to access any of our services or simply learn more about what we can offer, please contact our Support and Information Line by phone or email. Our friendly team can offer support calls as well as signposting our services – please get in touch to enquire about this.

Other organisations

Scoliosis Association UK

Scoliosis Association UK

SAUK provide advice, support, and information to people affected by scoliosis and their families. They offer a phone and email helpline, a membership network for people impacted, patient meetings and up-to-date self-help resources. They also run awareness campaigns for the health professionals and the public.

Outlook logo

Outlook

A national, highly specialist psychological service based at North Bristol NHS Trust, supporting adults (16+) with appearance-related distress. They can provide face-to-face and remote support via NHS Attend AnyWhere. Please speak to your GP or healthcare professional to discuss a referral.

Hands typing on a MacBook keyboard

NHS

Please have a look at the NHS conditions page for official guidance on scoliosis, more information about treatment options and guidance on when to see a GP.