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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.
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)
- Location: UK
- Website: www.sauk.org.uk
- Helpline: 020 8964 1166
- Social Media: Facebook // Twitter
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
- Location: USA
- Website: www.scoliosis.org
- Social Media: Facebook
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
- Locations: Australia, Canada, Guyana, Hong Kong, Ireland, Israel, Kenya, Lebanon, Mexico, Morocco, Peru, South Africa, Sweden, Turkey, UAE, UK, USA
- Website: www.curvygirlsscoliosis.com
- Social Media: Facebook // Twitter // Instagram
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
- Location: Netherlands
- Website: www.scoliose.nl
- Social Media: Facebook // Twitter
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.
SupportGroups.com
- Website: scoliosis.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.
Looking for support scoliosis found age 4 I had surgery with Harrington rod at 12 At age 52 had right and left hip replacement now Age 56 my right shoulder is causing me pain it’s not resting in the correct position don’t know what that means had 2 steroid shots and some calcium removed with needle! MRI shows I have Cervical stenosis with pressure on spinal cord! They want to fuse the neck! I’m currently having muscle spasm around the right flank that is sharp and fast then happens again within minutes or could be hours! Each body part is different Dr. I feel like they don’t get what the scoliosis is doing to the body and the want to keep operating and replacing body parts instead of helping have some kind of quality of life without cutting on various body parts! I live in Northern California Drs are in San Francisco 2 1/2 hours from my home! I’m afraid I’m not making the right decision to proceed with the next surgery!
Hi Sherri,
We can certainly offer you support with your scoliosis and have helped many people from the US, including California.
I will ask one of our Patient Care Team to get in touch to discuss your condition in more detail.
Best wishes,
Erika
My 12 years old daughter got diagnosed in January with scoliosis and doctor says it’s severe. She doesn’t experience any form of pain. I have gone through online reviews about people’s experiences with spinal fusion and it’s quite scary. Please I wish we could get a conservative way of handling the health condition other than surgery. Please what do you advise
Hi Chinenye,
We can certainly offer you support with your daughter’s scoliosis.
I will ask one of our Patient Care Team to get in touch to discuss her condition in more detail.
Best wishes,
Erika