Scoliosis (and its symptoms, such as chronic pain and reduced mobility) can have a huge impact on the lives of those affected by it. However, as many scoliosis sufferers will no doubt agree, it can make a huge difference simply to speak to other people who are suffering from the same condition.

 
Scoliosis Support
 
With that in mind, here is a list of scoliosis support groups (both online and offline) around the world. We will be updating this list periodically, so if you run or know of a scoliosis support group in your territory, please let us know via Twitter (@ScoliosisSOS) and we will consider expanding our list accordingly.

Scoliosis Association (UK)

SAUK is a nationwide support organisation for scoliosis sufferers in the United Kingdom (and their families). They provide advice and information on the condition, and aim to raise awareness both within the healthcare industry and amongst the general public. Their helpline (see number above) is manned from 9am to 5.30pm every weekday, and it allows people to phone up and receive friendly guidance and support instantly.
 

National Scoliosis Foundation

Headquarterered in Massachusetts, the NSF is a nonprofit organisation that aims to help “children, parents, adults, and healthcare providers to understand the complexities of spinal deformities such as scoliosis.” They offer numerous different types of support, including early screening programmes, advocacy / awareness initiatives, and numerous informative resources for scoliosis sufferers and their loved ones.
 

Curvy Girls

 
Curvy Girls was founded in 2006 by a young scoliosis sufferer named Leah. It began as a small support group specifically aimed at children and young people with scoliosis, and it has now grown into an international success, with groups currently meeting in a dozen different countries on six continents across the globe (see list above). 
 

Vereniging van scoliosepatiënten

This Dutch-language website (roughly translated, the name means ‘Association of Scoliosis Patients’) hosts a wide array of informative resources for scoliosis sufferers, as well as a forum where Dutch-speaking scoliosis patients can interact with and support each other.
 

Beyond A Curved Spine

Beyond A Curved Spine is a “scoliosis awareness hub” based in Lagos, Nigeria. They aim to raise awareness of the condition while also providing financial and emotional support to scoliosis patients who need it.
 

SupportGroups.com

SupportGroups.com is a website that houses online support groups (forums) for a wide range of different conditions and life events, from depression and eating disorders to divorce, alcoholism, PTSD and more. Their dedicated scoliosis group is 17,800 members strong at time of writing, and the forum’s open style encourages users to share their feelings and offer support and a friendly ear to fellow scoliotics.
 
This list is curated by the Scoliosis SOS Clinic – click here to find out more about us and what we do.
One question that’s often asked about scoliosis is whether or not it counts as a disability. Many scoliosis sufferers are themselves uncertain about this, so today we’d like to try and provide some concrete information on the subject.
 
A ‘disability’ can be defined in a number of different ways, making this question a difficult one to answer simply. We’ve approached it from a few different angles below; please note that all information given here is based on UK legislation, so the facts of the issue may differ if you live elsewhere in the world.

Are children with scoliosis eligible for DLA?

If you have a child under the age of 16 who suffers from a disability, you may be able to claim some money from the government to help you look after them. This is known as the Disability Living Allowance (DLA), and claimants can receive anywhere from £21.80 to £139.75 per week depending on the severity of the child’s disability.
 
So does scoliosis qualify as a disability in this instance? According to www.gov.uk, your child must meet at least one of the following criteria in order to claim DLA payments:
  • They need more looking after than a non-disabled child of the same age
  • They have difficulty getting about
Scoliosis affects a lot of people under the age of 16, but relatively few of these cases are so severe as to necessitate special care or impair the child’s ability to get around. You will not be able to claim DLA for your child’s scoliosis unless at least one of the above points applies to them.

Can adults with scoliosis claim disability payments?

Under the current rules, there are two forms of financial assistance available to disabled adults in the UK: Personal Independence Payment (PIP) is for people aged 16 to 64, while people aged 65 and over can claim Attendance Allowance. PIP, like DLA, pays out anywhere from £21.80 to £139.75 a week; Attendance Allowance claimants receive either £55.10 or £82.30 a week.
 
Eligibility for these two schemes is dependent on a variety of factors, but for now we’re just going to focus on the question of whether a curved spine is enough of a disability to qualify for PIP / Attendance Allowance. According to the UK government’s website, the requirements are as follows…

PIP (for adults aged 16-64):

To claim PIP, you must have a long-term health condition or disability that affects your ‘daily living’ and/or makes it hard for you to get around. You can only claim if you have been experiencing these difficulties for at least 3 months and expect them to continue for at least another 9 months (though that last part doesn’t apply to terminally ill claimants).
 
There are two types of PIP: the daily living component and the mobility component. Some people receive both, while others receive just one. You may be able to claim the daily living component if your scoliosis makes it difficult for you to carry out routine tasks such as bathing, getting dressed, and preparing meals; the mobility component could be available to you if your curved spine prevents you from getting around easily.

Attendance Allowance (for adults aged 65 and over):

The Attendance Allowance scheme is designed to help older people pay for any care they require as a result of health conditions and/or disabilities. Payments are made according to a two-tier system: the lower rate (£55.10 per week) is given to people who need help/supervision during the day OR during the night, while the higher rate (£82.30 per week) is reserved for terminally ill people and individuals who require help/supervision around the clock.
 
In order to qualify for Attendance Allowance, you must meet both of the following criteria:
  • You have a physical disability and/or a mental disability
  • Your disability is severe enough that you require supervision and/or help caring for yourself
You may be able to claim an Attendance Allowance if your scoliosis means that you require the care or supervision of another person.

Can scoliosis sufferers park in disabled bays?

Financial aid aside, another benefit afforded to disabled people in the UK is the Blue Badge, which allows the holder to park in spaces that are reserved for disabled people.
 
 
There are a number of things that can qualify you for a Blue Badge – in particular, people who claim the mobility component of the Personal Independence Payment (see above) are almost always eligible. There is a Blue Badge eligibility tool on the government’s website that will help you to determine whether or not you qualify for a Blue Badge in minutes.
 
So let’s come back to the big question: is scoliosis a disability? No matter how you define disability, the answer – at least here in the UK – is almost always no, unless it limits your ability to get around and perform daily tasks.
 
In other words, it tends to depend almost entirely on the severity of your spinal curve. Scoliosis doesn’t automatically count as a disability; each case has to be assessed individually.
 
If you are suffering from scoliosis – no matter how mild or how severe – we at the Scoliosis SOS Clinic can help you to overcome your symptoms and achieve a better quality of life.