Scoliosis: Life, Support & Friends

I thought for my first blog I'd introduce myself and tell you a bit about my Scoliosis journey. So, my name's Kat and I'm currently 16 years old. I was diagnosed with Scoliosis in 2009 after a holiday to Florida where my Dad noticed my ribs were sticking out. My first appointment with my surgeon was 2 months later, where I was told I'd have to have surgery as my curve was already at 44 degrees and was too late for bracing. When I had surgery in January 2010, my curve had increased to 53 degrees. My surgery took 6 hours and I came out with an almost fully straight spine (3 degrees). My recovery was quite a speedy one, so when I finally went back to school I only missed an hour of it as I went home early. From having the surgery, I can tell you that having the surgery is really worth it! The pain decreases a lot after surgery. You may get a few bad days, but nowhere near as many bad days as you had before surgery. There are so many reasons why having the surgery is wo...

ScoliosisJournal have produced a study Development of an online information and support resource for adolescent idiopathic scoliosis patients considering surgery: perspectives of health care providers Authors: Radha MacCulloch , Joyce Nyhof-Young , David Nicholas , Sandra Donaldson and James G Wright Background Adolescents with idiopathic scoliosis who are considering spinal surgery face a major decision that requires access to in-depth information and support. Unfortunately, most online resources provide incomplete and inconsistent information and minimal social support. The aim of this study was to develop an online information and support resource for adolescent idiopathic scoliosis (AIS) patients considering spinal surgery. Prior to website development, a user-based needs assessment was conducted. The needs assessment involved a total of six focus groups with three stakeholder groups: (1) post-operative AIS patients or surgical candidates (10-18 years) (n=11), (2...

Majority of you are aware that I have been campaigning for awareness for some time where Scoliosis is concerned, you will also know that we got our heads together to create the Scoliosis Official UK awareness bracelet, this has been a long time in the making but now we are finally launched and ready to start sending them out. ScoliosisNutty in association with the SAUK bring to you the UK's official Scoliosis Awareness Wristband to help promote Scoliosis as a condition that many people suffer from (myself included) or have suffered from, the aim of the wristband is to raise money for on-going research for Scoliosis. ScoliosisNutty have donated half of their stock to the SAUK to enable them to raise money also. The SAUK carry out valuable work for the Scoliosis community so it pleasing to know we can support them. Should you wish to order your Scoliosis Wristband then please visit the ScoliosisNutty website and complete the order form Thanks for your continued support and lo...

I have been a member of the Scoliosis Assocation UK for a while now and I receive their magazine and keep up to date with what is happening in the UK with regards to Scoliosis. For those who are not already members then I would visit Scoliosis Association UK , doesn´t matter if you are in the UK or abroad, they will accept members from anywhere, just like Scoliosisnutty does. Their magazine covers fund raising events that you can get involved with, the campaign fund, regional news and their secretaries, accounts from people going through diagnosis, surgery, a section for children called "Twist and Shout" and a feature at the back with letters to the editor, it really does help keep people connected. In their issue number 81, November, 2009, I noticed that my blog was featured and I was gobsmacked, I never expected them to feature me but their noticeboard page has a little bit about me and the blog I run, I wanted to share this with you, I have scanned the page where I ...

I wanted to take some time out to talk about Llweyn on our Scoliosis Support Group, Llweyn is a part of the Scoliosis Association of British Columbia, Canada (Chapter 100 of the Scoliosis Association, Inc.), she is an inspiration to the members of our group, has a lot of support and help to offer. Scoliosis Association British Columbia Is the second Canadian Chapter but the first to receive, after 3 years of working with the Canadian government, Registered Charity status in April, 2008. This means that the Scoliosis Association can now do some fund-raising and issue tax receipts, along with opening a proper charity bank account that does not charge monthly business fees. They do not have a website at the moment but you can contact Llweyn on our support group or email her directly. Scoliosis Association: Llweyn Working alongside Llweyn is Marion Primeau who is associated with the other Canadian Chapter of Ontario, Marion's chapter has also applied to become a Registered Charity. Sco...

I would like to extend a warm welcome to Judith from our Scoliosis Yahoo Group , who has decided to join me in blogging on the ScoliosisNutty blog . A little background on Judith: "I first realised I had scoliosis when I was about 15 in the mid-1970s", and she said to her father "I go in more on one side than the other". He said "you've got scoliosis" but that was the end of the matter, nothing done, no medical advice. Judith has actually had back pain for as long as she could remember, and says "but only when I had to sit on something without a back and it wasn't that bad. I think in view of the problems people who had surgery at that time see to have now, I am quite glad". Fast forward to 2006, when her daughter Laura pointed out that she seemed to have one hip bigger than the other. Judith says "We went to our GP and he referred her to our local hospital, who in turn referred her to the RNOH at Stanmore. She had surgery there in ...