Scoliosis - the Hard Reality in South Africa

Hello good people!

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Today I'm going to write about a condition that affects so many people, including myself, but is often misunderstood - scoliosis. This will be a two part article; today I will focus on the statistics, and next time I will write more about the human aspect of the condition, including comments from other sufferers.

I presume that the majority of people today know, in essence, what scoliosis is - an unnatural curvature of the spine. However, that description is grossly limited.

• Scoliosis is a lateral curvature of the spine with an axial twist that causes a distortion of the ribs.
• Idiopathic scoliosis is a multifaceted disease that compromises five of the body's systems: digestive, hormonal, muscular, osseous (bones), and neurological.
• Scoliosis affects the entire skeletal system including the spine, ribs, and pelvis. It impacts upon the brain and central nervous system and affects the body's hormonal and digestive systems. It can deplete the body's nutritional resources and damage its major organs including the heart and lungs.
• 80% of scoliosis is idiopathic (cause unknown).
• Conditions arising as a result of scoliosis include rib deformity, shortness of breath, digestive problems, chronic fatigue, acute or dull back pain, leg, hip, and knee pain, acute headaches, mood swings, and menstrual disturbances.
• Scoliosis is a progressive condition that can continue to progress even after skeletal maturity. Millions of scoliosis sufferers are routinely misinformed about the accelerating nature of their spinal curvature progression.

I was diagnosed with scoliosis at age 14, and measured my lateral spinal curvature to be 40 degrees (according to the cobb angle) to the right. Within four months of diagnosis, I had undergone corrective surgery. I had spinal fusion done, and I now sport a titanium rod and four screws alongside my spine. 

What concerns me most about scoliosis in South Africa, is the lack of screening and knowledge. Patients are often unaware of their condition, until it has noticeably progressed, as is spotted by a family member. They are then not properly educated or informed about their condition in order to make good choices as far as their treatment is concerned.

Upon doing some research, I came upon A Study To Determine The Incidence Of 
Scoliosis In School Children Within The Metropolis Of Johannesburg, South Africa . This fascinating 2006 study screened 649 children, between the ages of nine and ten, from 32 schools in the Joburg Metro area. The results showed that 8.2% of children screened manifested scoliosis of the spine. The study also revealed that at the time, no scoliosis screening was routinely carried out in these primary schools. 

I also happened upon a site where I read a brief article, co-authored by the orthopedist who diagnosed me. This article states that the statistical frequency of scoliosis (apparently, not South Africa specific) is as follows:

• Scoliosis curves measuring at least 10° occur in 1.5% to 3.0% of the population
• Curves exceeding 20° occur in 0.3% to 0.5% of the population
• Curves exceeding 30° occur in 0.2% to 0.3% of the population
• Small spinal curves occur with similar frequency in boys and girls, but girls are more likely to have a progressively larger scoliotic curve that will require treatment.

The article further states regarding postoperative prognosis:

"Patients usually don't experience much pain once they have recovered from surgery. A return to most sporting activities is possible in 6 to 9 months after surgery. However, due to permanent limitation of some spine movement following surgery, participation in contact sports, such as football or rugby, is discouraged."

I would, however, beg to differ on both accounts. Without proper screening, it is impossible to know just how many children have scoliosis which is going untreated. As for postoperative prognosis, I am living proof that failed scoliosis surgery is an all-too-common reality. Although I feel that surgery has it's place in the treatment of severe and debilitating spinal curvatures, I feel that orthopedists are far too eager to put their patent on the operating table. I have connected with hundreds of scoliosis sufferers from around the world, and South Africa, who, as adults, suffer high levels of pain and limited mobility, due to failed spinal surgery. I have, to date, found very few postoperative adults who do not experience high levels of discomfort, due to surgery. 

I would in no way like to scare newly diagnosed scoliosis patients by this article. But I feel that there is far too little understanding of this disease and the consequences of various treatment options. It is a major and multifaceted condition that can ultimately affect one's life greatly, particularly as an adult. So parents, please check your child's back regularly, especially during growth spurts. If you are diagnosed with scoliosis, or you are the parent of a child with scoliosis, do research. Lots, and lots of research. Never take your doctor's word for it out of ignorance. Know your options and become an advocate for yourself and all other "twisties" out there. If you know someone with scoliosis, why not take a moment to ask them about how they are doing?

Thank you for reading this long post :) As you can see, I've included many explanatory links. If you are interested in scoliosis, look them up. 

Keep smiling and rocking your curves ;)