ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, January 14, 2014

Does The "Rare" Word Hold Us Back?

The Perception

Most Americans don't associate themselves with rare things, except perhaps a steak dinner.  We don't have rare coins in the jar of change on the bookcase.  We don't have rare stamps in our desk drawers.  Our dogs aren't rare species.  The vase in the living room is hardly rare.  We dream that the autograph that we collected in fourth grade might someday be rare and valuable, but that never happens.  If you told me that I might have something rare in my home, I would roll my eyes and say, "Dream on."

That "rare" word doesn't project the belief that most of us have that something is possible.  It seems
incredibly unlikely.  It's pretty much impossible to us.

We have better words for those unlikely things that we really believe happen to us -- exceptional, unusual, notable, exclusive, ...  We do believe that unlikely things can and might happen to us.  It's just that we never hear anyone use the word "rare" when they speak of a winning lottery ticket or a particularly talented child.

"Rare" just doesn't impart a sense of possibility to most people.  We need to change that.

The Reality

"Rare" is an important legal designation for diseases, and I understand that. I so wish that they had chosen a different word... and a better definition.  A rare disease is defined as one that "affects fewer than 200,000 Americans."   That definition is normally interpreted as a disease with which there are fewer than 200,000 Americans living at this moment.  It's not a definition that speaks to the likelihood of an American getting a disease.  It does not speak to the possibility of it turning your life upside down.  It speaks to the likelihood of your living with the disease at this moment.

The prevalence-based definition bolsters the perception of rare disease not really being a possibility for most of us.

Think again.  Your odds of getting ALS are high.  Your odds of living with ALS for long are low.  It's a small peer group.  Think about that!

The numbers may fit the definition of a rare disease , but we need make it clear to people that it's not an unlikely disease.  It's not impossible.  It's very possible to affect you and your family.

The upcoming Rare Disease Month should make every American squirm with the real possibilities.

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