Emma's Campaign For Scoliosis Testing In Schools
Sign Emma’s Petition to re-introduce spinal tests in schools.
Emma’s petition is to help raise awareness about scoliosis and the need for testing in schools. To test a child for scoliosis will take less than a minute. If scoliosis is caught early enough, surgery as well as years of anguish and pain may be avoided. For many, all that is needed is a simple brace worn under clothing to help prevent the spine from twisting.
Emma was diagnosed with scoliosis when she was 10 years old. Bracing was not an option for Emma as it was not caught early enough. Emma wanted to start the petition for scoliosis testing to help raise awareness about scoliosis. Early intervention can prevent the need for surgery, decrease the chance of deformities and ease the mental trauma involved with scoliosis and major surgery.
Please add your support and sign Emma’s petition today.
Recent Signatures
21 Aug 08 | Marilyn Hatcher
I first had back problems aged 23 when pregnant with my first child in 1977, but was told it was pregnancy related. As the years went by it got worse, would frequently seize up, but I was then told it was lack of exercise My neck also caused severe problems that began aged 13 when I was told the pain was stress relatedand by my early 40s I was told I had Vascular Basilar Insufficiancy, but not what had caused it. I finally had spinal xrays taken 5 years ago which comfirmed scoliosis, and discs between my lumbar vertibrae were non exixtant. Things have got worse, xrays taken three weeks ago now show Thoracic curvature to the left and Lumbar curvature to the right, classic S shape. Most of my discs have worn away. As my mother had similar problems never investigated but she was told it was possibly osteoporosisand my eldest sister also has some scoliosis it appears to be genetic. I am now waiting to see a back specialist but have been told at 55 I am too far gone for surgery, and pain relief is the only thing left. I have a 17 year old daughter who often gets back pain, but with a visual check nothing shows up. Testing for scoliosis in children throughout their growing years is an absolute MUST.
20 Aug 08 | Linda Adams
If such a painful and disfiguring condition can be avoided we must do everything possible to prevent it.
20 Aug 08 | Emma Bernard
18 Aug 08 | Meredith Wallace
I hope that all goes well.
16 Aug 08 | Jack Norman
I have lived with constant chronic pain much of my life which has been a continual struggle to overcome and compensate for the disability of congenital scoliosis. At the time of my birth and early years there was little that medicine could offer me other than a leather and steel brace that I wore through elementary school. Now, of course, through early detection and intervention there is no reason any child should ever have to live the painful life I have led.A 63, I am a model of scoliosis fully matured. To study my case would be to observe with accuracy what becomes of a child who grows to adulthood without receiving early detection, intervention, and treatment for scoliosis. If I can be of any assistance in getting this message out of early detection of scoliosis, I would be lad to do what I can.I am attaching below a QA article I wrote for publication on Ms Shanta Everingtons blog on scoliosis. I offer it for whatever aid it may have to supporting this worthwhile project.Thank you,Jack NormanPS I was moved and deeply touched by your account of your own experience of living with scoliosis. Jack Norman shares his experiences on striving to be normalJack Norman, 63, retired from a long career in television promotion and marketing in 2006. He lives with his wife and son in North Georgia, USA and has two other adult children and three grandchildren. Here, he shares his powerful, moving and ultimately uplifting story of his struggle to live a normal life with a curved spine. Jack welcomes your contact via email at jn2tv4aol.com.Can you tell me about when were you first diagnosed with scoliosisI was two years old when my mother took me to our family doctor and it was discovered that I had been born with scoliosis. The kyphosis was only slightly discernible at that time, but it was clear that my spine was curved. My scoliosis did not interfere with my early childhood. I attended my first day at school holding a new school bag with a brand new ruler, eraser, unsharpened pencil and wearing an I Like Ike campaign button. The year was 1952. School was enjoyable for me then, because the curvature was not pronounced enough to be noticed by other kids. Interestingly, my family didnt talk to me about my condition so it wasnt until I was in the first grade that I discovered it. Curiously, when I would reach around to my back with my left hand, it was fine. But when I circled my right arm around to my back just below the shoulder blade, there was an obstruction. That was my first awareness that something was wrong with me, that I was different. How was your scoliosis treated and how successful was thisIn 1963, when I was a sophomore in high school, my nextdoor neighbor told us about a doctor in New York City who was doing breakthrough back surgery and, in some cases, actually straightening curved spines. With that hope in mind, my family put me on a plane to New York City and made arrangements for my first surgery, a spinal fusion. Even though Dr. Von Lackum was a pioneer and innovator in openspine surgery, this was a radical and dangerous procedure for the times. However, he told my family that if I did not have the surgery to stop the progression of the curvature, I would be paralyzed or dead by age 35.As a teenager, I was young enough that I trusted doctors and the medical system completely. I flew to New York City alone, caught a cab to the hospital and signed in for what was, at that point, an exciting adventure. By the time I awakened in the recovery room, however, the excitement was gone. In its place was an agony that I never expected and will never be able to forget. I was told later that the surgery had been difficult and that I had spent many hours under the knife. It was, however, considered a success, and my scoliosis was thought to stabilized. I flew home to Norfolk, Virginia in a fulltorso body cast. My mother and sister met me at the terminal and took me home for a four to six month recovery. Given the severity of my scoliosis, I am very thankful for my mothers sacrifice in paying for my treatment. That spinal fusion enabled me to live the most normal life possible.I ended up having a total of four surgical procedures, the last in 2002. I had thought all along that I had stabilized at 53 degrees and that it wasnt going to progress any further. Apparently, sometime between 1995 and 2000 the destabilization took place.Change in pain levels over the years correlate directly with the sequence of surgeries. My overall pain level increased noticeably after each surgery, along with decreased flexibility and rotation of the spine, especially the cervical area.How have your experiences with scoliosis influenced your life and outlookIt is difficult to know exactly how scoliosis has affected my outlook on life. I cannot imagine life without it. It has been with me wherever Ive gone, like a friend you dont want but in time learn to tolerate. I believe that looking back one day I will see that my disability has been directly responsible for my search within to rise above it. For me, that search has led to a strong professional drive as well as to a deeper spiritual development that I may not have experienced otherwise. From my deep feelings of shame over scoliosis came an aggressive compulsion to succeed and to show the world that I was just as normal as anyone else. This played out in the form of extremely long hours at work that I would dedicate to any assignment, along with a pattern of heroic endeavors to do whatever it took to fulfill any request made of me by my managers, regardless of how unreasonable. I did my best to make myself indispensable and valued by my companies. I thought at the time that surely my 1215 hour days and heroic allnight work sessions would cause me to be looked upon as normal. It didnt work Even though I won numerous industry awards, substantial cash prizes and bonuses from my company and the praise of my peers and leadership, I could never silence that cry in me that said I was different, unequal to, and less than others. My wife remembers a single day, perhaps the Red Letter Day of my professional life, when I was awarded a large cash bonus, was promoted to vice president, and received a standing ovation from my entire company. I missed the moment of glory, because I was at a hospital having xrays made of my back. But later that night, after hearing about my promotion, I sat against the headboard of our bed and said to my wife, I hate myself. Nothing could fill that empty hole in me. It was not until my spiritual search led me to a mature faith through Christ that I was able to accept myself and be at peace with who I am. Looking back on that frenzied life of trying to compensate for my scoliosis, I am very thankful for the place of peace I now enjoy. If my disability has contributed to bringing me to where I am now, then I see it as a blessing and not a curse.Do you think the male experience of scoliosis differs to the female and if so, howThe biggest setback for me as a male with scoliosis is its negative impact on my ability to participate in sports. I dont think I encountered many experiences more humiliating than having to explain to my high school gym coaches and peers in gym classes why I couldnt participate in the school athletics program. Some coaches thought I was just shirking, others that I was weak, and of course in the showers peers ostracized me immediately for being different. The pain of this rejection was most acute at these times, especially for a young boy trying to form an image of himself and understand where he fit into his various social groups. These events left deep emotional scars. As a 63 yearold adult, I have now made much progress in this area of selfesteem, but it is still painful to reflect on. Kids with disabilities suffer cruelly at the hands of socalled normal peers, especially males in the competitive field of athletics. For an adolescent boy or a teen, achievement in sports is where much of their positive selfesteem comes from. When I wore what was known as a Taylor brace, in elementary school through the 7th grade, I was a highprofile target for taunting. Perhaps youre familiar with this brace. At first glance it calls to mind images of the medieval iron maiden, a device of torture that locked the victim into a hinged cage with protruding spikes. My instrument of torture was made of a steel frame with holes for the arms and many leather straps that cinched the whole thing tightly onto the torso. Two steel rails in the form of a normal shaped spine pressed against my notsonormal twisted spine and did its best to conform me to the shape of the steel one. Growing up like this resulted in crippling selfconsciousness that dogged me all the way through life. For someone who had spent most of his life trying to remain invisible from the eyes of others, the experience of speaking in front of a group was blatantly terrifying for me. I knew my fears were unreasonable but that didnt help. Decades after I had put the physical brace aside, the debilitating impression it made on my mind and soul was still intact. I was terrified that anyone looking at me was going to know my dreaded secret that I had fought to keep to myself that I was different, and worse, that I was deformed. I had done my best to disguise the curve of my spine and hide my deformity, buying shirts an extra size larger to make them fit looser, standing as straight as I possibly could, and always either consciously or subconsciously, distracting anyone with me from seeing my back. Really, it was not until I retired three years ago that I began to let go and to come to peace with myself. My entire career was spent in the emotional agony of feeling deformed and rejected and battling the chronic pain that drained me and gave me an appearance of being in nearly constant anguish. I thank God most of that is over now. It is bliss for me now to live daily with a family that loves and accepts me as I am.What advice would you give to someone who has just been diagnosed with scoliosisTo be diagnosed with scoliosis today is much different that it was decades ago. With modern surgical techniques, there is little reason for anyone to suffer the pain and humiliation I experienced. Discovered early and with intervention, curved spines are routinely reconstructed and made normal. The advice I would pass along for consideration for anyone with scoliosis is the same I would recommend to someone with any disability or serious illness know who you are apart from your disability dont let your disability define the person you are and are capable of becoming.The greatest truth I have learned from my life experience so far is that we are more than our physical selves. To limit our selfview to what we can see in a mirror is to cheat ourselves of our best and most important part. For me the best part is my spirit and its perseverance beyond my physical body.
16 Aug 08 | Lee Darcy
All through grade school, I was regularly tested for scoliosis. Nothing was evident until I was 16. At the time a doctor discovered my scoliosis, I was told it was minor and not to worry about it. Two years later, I was in an orthopedic surgeons office discussing possible surgery because of the advanced curvature. I chose not to have the surgery, and rely on chiropractic adjustments to help with the pain.
16 Aug 08 | margaret elliott
As a teacher, I fully support this testing.
14 Aug 08 | Holly Brock
I completely support your goal to raise scoliosis awareness. It is often surprising how many people go undiagnosed. I just had the surgery to help fix my severe scoliosis last month. I am fifteen years old. Thanks for what you are doing for people like me
13 Aug 08 | Natalie Anderson
I was diagnosed in 7th grade with scoliosis and kyphosis. I whole heartedly agree that the screening should continue. I also think more publicity might help with a better treatment. Being 12 or 13 is a difficult time as it is for your personal image, but to be told you must wear a back brace for 23 hours a day for a few years or have your spine surgically fused together in places and a rod inserted is terrifying It was an awful experience I wish on no one, but going undiagnosed is even worse. You cant do much for this affliction after you stop your growth spurt Thanks Gillian for your support
13 Aug 08 | Melissa Martin
12 Aug 08 | Androulla Nicola
11 Aug 08 | Jo Moran
Good luck with this. Such little effort is required for a preventative measure.
11 Aug 08 | sue stafford
good luck with the petition
11 Aug 08 | jennifer haney
I live and work PE Teacher in the USA and we have mandatory scoliosis testing in schools and it truly works. Girls are tested in 7th grade ages 1213 and boys in grade 8 ages 1314 I highly reccommend it.
11 Aug 08 | Ariam Abraham
GOOD LUCK WITH THE PETITION
11 Aug 08 | Cathy Ellis
Scoliosis testing in schools is essential. I first noticed my spine curviture when I was about 12. Im sure it was there long before that My curviture has been getting worse every year, and I am now 54. The pain is constant. Good Luck Emma with your petition.
10 Aug 08 | Tracy Wardle
10 Aug 08 | Linsey Tomlinson
I had spinal surgery back in 1990 age 11 for Scoliosis and a S shaped curve. I also had cosmetic surgery for the hump it created in 92. I dont think surgery is an easy quick fix answer, by then you have the physical difference, pain and also self image problems trying to get something nice to wear what a job so anything which promotes awareness and manages to spot this early I totally support. Good Luck Emma x
10 Aug 08 | Ian Tomlinson
For my wife, best of luck Emma
09 Aug 08 | shirley mcenery
good luck emma with your petition, had corrective surgery when i was 26, prior to surgery had halo fitted, surgery went well, but have suffered continuos pain on the right side of my head which is now spreading to my left side. testing should be done in school early on to hopefully prevent a life of suffering and unnecessary pain.
08 Aug 08 | Siobhan Elliott
My scoliosis was not diagnosed until I was 14 by which time it had progressed severely. I had a harrington rod and spinal fusion at the age of 20. Now, at 45 I have pain every day and am watching my two cildren like a hawk and will do everything I can to save them from suffering the same fate. Testing in schools is imperative, its so hard to believe that it isnt happening. Equally, children of scoliosis sufferers should be monitored closely and not left to present too late. Good luck with the petition.
08 Aug 08 | Mohima Khanom
08 Aug 08 | Catherine Wood
My friend has this condition and had to have a major operation last week. Testing would prevent other people having to go through the same agony.
07 Aug 08 | j b
i hope this petition passesx
06 Aug 08 | Sally Newsome
04 Aug 08 | Eveline Carr
As a sufferer of severe scoliosis, I urge people to sign this petition.
04 Aug 08 | Sandra DeLong
04 Aug 08 | Craig Lewis
03 Aug 08 | Nadine Fisher
I think this is a fantastic idea. My little girl has Sprengels Shoulder, and I am concerned about her spine also. Fortunately we have had great support in this from the NHS. Testing in schools means ALL kids would get help if needed
02 Aug 08 | Fiona Wilson
01 Aug 08 | Kathryn Hirt
I can remember being tested for scoliosis in gym class as a child each year. The process is simple, fast, and effective. There arent many times in our lives when we can help prevent pain for our children. Catching scoliosis, before surgery may be required, can be one of those times.
31 Jul 08 | Lisa Weedon
31 Jul 08 | Tracy Bartlett
All my support and blessing Emma I pray your petition is sucessful
31 Jul 08 | Cristina Ferlusca
I was diagnosed with scoliosis since I was 14 but was a bit too late...Everyday Im in pain and is not easy. I would like to see this campaign in schools as soon as possible.
31 Jul 08 | Elaine Beverley
31 Jul 08 | Glenda Edward
My son has a scoliosis and is currently on the waiting list for surgery. He has undergone major heart surgery for a congenital defect since birth, which is the most likely cause of his scoliosis. Why didnt cardiac medics notice the deformity or did they but ignore it as not part of their remit Angry and upset mum of 14 year old Sam, who has had enough to deal with
31 Jul 08 | Irina Ross
30 Jul 08 | Andrea Fritz
30 Jul 08 | Maryann Dougherty
It only takes a few moments and can save years of pain
29 Jul 08 | Patricia Foote
If it helps one person, then its worth it. Please, please consider doing this and save people from a painful lifestyle
29 Jul 08 | Carolyn Casey
28 Jul 08 | Geri Heath
its not a complicated test to do, why not help people have one less pain in that difficult life
25 Jul 08 | Alexander Lester
25 Jul 08 | Barbara Carlucci
24 Jul 08 | Kimberly Kelly
My father suffered from scoliosis and I would like to see testing taken more seriously. It is done in American Schools however my sister now is showing signs of her spine curving and it was not caught in school examinations.
24 Jul 08 | Izabela Winders
23 Jul 08 | Michael Borses
My scoliosis was not caught until I was 22 years old and injured my back. The doctor looked at one of the numerous x rays they had taken and finally said in astonishment, You have scoliosis. I never understood all the aches and pains in my body. It prevented me from participating fully in athletics, often resulting in sitting on the sidelines with injuries and great pain. I went so far as to purchase new shoes to help me deal with the pain I thought resulted from poor form in running and standing. When I was 19 a dancer friend of mine was giving me a back massage to help alleviate some of the excruciating pain I routinely suffered when they remarked casually you have scoliosis. I scoffed and completely disregarded the amateur diagnosis surely a doctor would have caught it. Despite the numerous X rays I had in the coming years as I endured cancer it was never mentioned. Then, as a side effect of cancer treatment I had a seizure, resulting in a fall to the ground which injured my back. It would be an additional 2 or so years before the scoliosis was finally caught, despite the numerous x rays. Im convinced the disease was not caught simply because NO ONE WAS LOOKING FOR IT. The intense pain of this condition can be prevented by a simple screening. It is a tragedy to miss an opportunity to prevent a lifetime of pain with such a simple and effective procedure.
22 Jul 08 | elizabeth marshall
Thankyou, please click the link on the confirmation email we just sent. Dont forget to double check your junk folder
22 Jul 08 | Teresa Brook
If a simple quick test can help to avoid pain and suffering the it should be done
22 Jul 08 | Emmajane Toolan
Why wouldnt they do something as simple and effective as this WHAT IS WRONG WITH PEOPLE