In the big scheme of things, I've been blessed. I have scoliosis, but my life is not in danger. I don't have to have painful and dangerous surgery to correct it. The most I have is a little pain, and I can't wear hip huggers. Many people suffer far worse.
But the reason I created this page wasn't to talk about pain and suffering. It's to try to find an answer. Why? Why do 3 percent of the world's populaton have this disease? Why, after having so many years of knowing about and treating this disease is there almost no progress? Yes, braces are a LOT better than they were thirty years ago, much more discreet and allowing more movement. Today, kids who wear braces can shower and play sports and do just about anything. But it doesn't answer my question: WHY??
Scoliosis is a deformity of the spine, causing it to grow in a curve and setting off the body's balance. Remember, back in junior high, when the nurse would come to gym class and have you hold your arms out, then bend forward? That's what they were looking for. The most common form is idiopathic, meaning it happens while you are growing, usually around the time you hit puberty and the growth spurt begins. The other type of scoliosis is congenital, meaning you were born with it. This is not as common. Many scientists and medical doctors believe scoliosis is genetic, that there is a certain gene passed down from generation to generation causing their kids to grow up with curved spines. I could have told them that. It's on my mother's side. I have it, my cousin, second cousin, and my sister to a certain extent. My sister's is so slight you she wouldn't even know it if the doctor hadn't told her. Some people are like that. Others have some back pain and their shoulders and hips are not aligned. That is how I am. Still others have curves that are so severe that their heart and lungs are in danger of collapsing, and they must have a very serious operation to put metal rods in their backs. I've known girls like this. It's not pretty.
I want more information, more research. I want to isolate the gene, so that maybe someday my children will be able to be cured in the womb. Maybe we can finally put an end to this disease that creeps through my family and the families of millions of others around the world.
At the very least, let's get the word out. Let's work toward easing the fears of all of the children who are diagosed. Let them know that they are not alone. That just because their bodies are "imperfect" has NOTHING TO DO with how much they are worth. Let them know that if they do have to face surgery, to not be afraid. Life will return to normal. You CAN have a full life and not let the disease stop you. All we have to do is reach out to each other...and demand an answer from those who can cure us.
Families With Congenital And Idiopathic Scoliosis
Protocol For The Symposium