Friday, August 22, 2014

Dystonia: Disease or Disorder

If you read various definitions of dystonia online, you will find that most medical references refer to it as a condition or disorder, while some patients call it a disease.  Have you ever given any thought to the difference? Is there something significant about the choice of words?

Well, for the medical community I would think so. They don’t just call something a disease just because it sounds good. What are some of the conditions that are considered diseases? Well, you have chronic diseases, such as cancer, lupus and obesity. There are deadly diseases such as ebola, Alzheimer’s and Parkinson’s. There are even curable diseases like malaria, and tuberculosis.

Dystonia fits into none of these categories. That is because dystonia is not a disease. It is a disorder, an abnormality of a body function that is either genetic, the result of trauma or other ‘dis – ease’. It is the indicator, not the cause, of a problem or change that has occurred.  The body is not necessarily harmed by dystonia. It is changed. It is when those changes affect other body functions, do we notice any discomfort.

So why do so many of us consider dystonia to be a disease?  Well, this can probably be explained in its definition.

Disease can be defined by two things. The first part - the inability of the body to perform at its normal state (also known as health) is best known. The second part is that the condition affects a vital part of the body. In other words, a broken finger is not a disease. 

But even this oversimplified definition doesn’t seem to cut it. The question of what defines a disease is a known conundrum. Check out this research published in the National Institute of Health database about the unclear definition of disease. 

This is because disease is highly dependent on what is considered normal.  Not surprisingly, this definition can change. Earlier in our history, homosexuality was considered a disease while osteoporosis was simply called old age. 

Could that be why we might consider dystonia a disease? Is it because it so different from what is considered normal? Hey, I’m not saying dystonia is by any means normal. What I am saying, is that the lack of social acceptance of those with it might make it a disease simply because society is so unforgiving.

It is already established that dystonia causes the body to not function at its normal state. Does it affect a vital function? By definition it does not. Dystonia affects the muscles we control with our mind (not the ones that keep us functioning, such as organs) Will it eventually get worst and kill you? No. Unlike Parkinson’s, dystonia isn’t on its own degenerative. That’s like saying ‘my leg got more broken over time’.. no, your leg ‘got more broken’ because a. you didn’t let it heal or b. you injured it again. 

But this condition, harmless as it may be, could be called a disease by some, because it limits their ability to live a normal life. It is a social disease- a disease that separates its sufferers from those around them.
So how do you cure the disease of dystonia? You bring awareness. You educate yourself on the symptoms, you find out what is causing it. You don’t ignore it and the people who have it. 

Sign the petition to bring national awareness to dystonia at

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