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When most people start paying attention to ALS, they realize that they've had relatives, friends, neighbors, or co-workers with this fatal disease.
The numbers that are published regarding people affected by ALS are much smaller than one would expect based on experience.
The problem is simply that nobody is counting noses. When a patient is diagnosed with ALS, the doctor doesn't report that case to anyone. The estimates of patient populations are just that -- estimates. Are the extrapolations accurate? It's time to find out.
If a disease is perceived as "rare" (especially one with a very grim outlook), does that affect diagnoses? Are doctors (who are trained not to look for zebras when most things are horses) mistaking ALS for other things? Are elderly patients dying from misdiagnosed strokes when ALS is the culprit? Do we have a numbers problem that is causing a medical diagnosis problem that is then contributing to the numbers problem? Catch-22?
Lou Gehrig was diagnosed in 1939, yet the disease continues to rob us of some of our best and brightest. It's time to start counting noses and facts. We know Lou's baseball statistics in exquisite detail, yet was he part of an organized registry of data regarding his ALS? No. There was no central information repository for cases of ALS in 1939 and there is none today. Many clues have been lost. It's the information age, so let's gather the information and figure this disease out!
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Visualize a Football Stadium
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| Suppose a football stadium is filled with every American with ALS. Estimates are that 5,500 people in the stadium die every year and another 5,500 come in as newly diagnosed people with ALS (PALS). In about the time that it takes to get a four-year college education, we have virtually all new faces in that stadium. To make things even worse, we have failed to retain the information we need to stop this terrible revolving door.
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