There’s a whole raft of illnesses and conditions that fall in the category of “rare diseases.” ALS is one of them. The “prevalence rate” for ALS – the percentage of a population with the disease at a given moment in time – is 5.2 per 100,000. Because the disease typically progresses so rapidly, and because confirmed diagnosis can take a very long time, only about 17,000-20,000 Americans are actually diagnosed with the disease at any given moment. That doesn’t sound like much out of a population of 330 million.
But when you reframe it, to focus on the proportion of the population that will die of ALS, the disease sounds a lot less rare. Roughly one in 600 people die of ALS. To help you visualize this, that’s about one kid in every graduation ceremony at a large public high school. By coincidence, at any given point in time, researchers claim that the average American knows about 600 people. So most Americans personally know or have known at least one person with ALS, more if they have lived longer and/or have a wider social network. If you expand this to the number of people each of us knows who have been impacted by ALS (such as relatives of the person with ALS) our contact with ALS shoots up dramatically. It goes from being rare to being a scar in every community.
The small town of Davidson NC, where I live, is living testimony to this. This story from our local web-based news site, News of Davidson, is a reminder of just how many people’s lives are affected by ALS. Six of us who live or lived in Davidson and who have ALS are featured in the story, but there are a number of other people living with ALS, from the past and present, with ties to Davidson or Davidson College.