- Picture the older patient with the hoofbeats of slurred speech. Stroke?
- Picture the younger patient with the same hoofbeats of slurred speech. Alcoholism again?
- Picture the homemaker having trouble opening jars. Arthritis?
- Picture the executive whose left arm feels funny and whose golf shot has gone all to pot. Pinched nerve?
- Picture the young athlete who can't hit the baseball. Time for eyeglasses?
People with ALS have incredible stories to tell of long and expensive paths they had to take to get a correct diagnosis. It often takes years for physicians to look past all of those red-herring horses and see the zebra ALS. We don't know how many people die every day from ALS without ever having been diagnosed correctly.
Doctors are trained not to jump straight to that "rare" diagnosis. Even if they suspect ALS, they don't want to make the diagnosis. There is nothing in the doctor's bag that will treat ALS, and there is no more difficult conversation on earth than to share that with a dying patient.
There are hundreds of such zebra diseases today. Every one takes a dreadful toll on individual patients and their families. Zebras are out of the mainstream for healthcare delivery and medical research. That's a costly mistake in many ways.
It's no secret that I'm not fond of the "rare" word to describe diseases. It gives some the impression that these diseases can't strike them. That's dead wrong. "Rare" does not mean unlikely. A zebra can strike any family at any time, and it's a lot more likely that you think.
It's Rare Disease Month. It's our chance to remind people that there are herds of destructive zebras whose hoofbeats must not be ignored any longer.